My journey to heal from CFS - diary

[researcher]

Hi y'all.

Regarding my sleep

There is a connection between my sleep quality and the severity of my symptoms AND there is a connection between certain things I do and the quality of my sleep.

Turning off the computer at 8pm definitely helps with the quality sleep (I've tested this again, and there is a pattern). This is now something I will be doing forever. I will also turn off my cell (actually put it in airplane mode) at this time, and use my blue light block glasses.

Next, test:

- Magnesium bisciclinate 200mg - 1g
- Turning off the computer at 7pm (30 days) and then 6pm (30 days).
- Meditate before dinner (8pm) for 30 days.
- Use GABA throughout the day for 30 days.
- Phenibut (has anyone tried?)

Next:

2) Fix my bowel movements - get regular. News: testing Mg citrate very soon!
3) Fix inflammation. News: I am actually scared with this. I am using large doses of Omega 3, still no results.
4) Assess gut and do another gut protocol if need be.
5) Recover my mitochondria.
6) Get my hormones balanced.

 

[researcher]

I had weakness, head pressure, neuromuscular symptoms...

I managed it with T3 (I have a Low T3 syndrome) and Idebenone (a synthetic compound Ubiquinol -like).

I also have neck problems (arthrosis), which I manage myself:

I seat on a chair with legs apart.
Then I bent my upper body between legs and let head pointing toward the floor.
I put my hands on the floor, and relax shoulders.

You have to feel your head's weight stretching your upper spine and relax your neck muscles.

I call it the "earth salutation"

I did it a few seconds/minutes, several times per day, each time I have ear pressure and each time I have neck pain...

I did it for weeks and now I am neck pain free, I just need to do it when I feel the stifness is coming back.
And it works very well!

Hi Patt, thanks a lot for your answer!

How/where can you buy T3?

Why Idebenone vs Uniquinol itself?

I WISH I could do that. I can't simply touch the floor w/ my head. :/ Thanks a lot, I will try to practice as much as possible tho.

Thanks!

 

[pattismith]

Hi Patt, thanks a lot for your answer!

How/where can you buy T3?

Why Idebenone vs Uniquinol itself?

I WISH I could do that. I can't simply touch the floor w/ my head. :/ Thanks a lot, I will try to practice as much as possible tho.

Thanks!

i have a prescription for T3 (Cynomel in my country).

I can't tolerate ubiquinol, it gave me a quick headache any time I tried it

 

[researcher]

@pattismith thanks for the answer, makes sense. What are your symptoms?

I am actually scared, because I thought I had this under control...

Last night I did everything right (I actually felt I needed a very good night of sleep so I added 200mg of Mg + Ionic minerals which in theory are AWESOME) and had the worst night ever:

https://ibb.co/bMuLv7

This is really really weird.

I am trying to put the pieces of the puzzle together. Mg and/or ionic minerals are bad? I had chickpeas for dinner last night - I try to go protein-free on Sundays to lower inflammation but I forgot that yesterday except for dinner, which was rice and chickpeas. I also didn't use my blueray blockers. Apart from that, everything was right. I can't understand this.

You could say "the app doesn't work" but the truth of the matter is that I feel bad today (and I always feel better when the app reports a good night of sleep).

 

[pattismith]

@pattismith thanks for the answer, makes sense. What are your symptoms?

I am actually scared, because I thought I had this under control...

Last night I did everything right (I actually felt I needed a very good night of sleep so I added 200mg of Mg + Ionic minerals which in theory are AWESOME) and had the worst night ever:

https://ibb.co/bMuLv7

This is really really weird.

I am trying to put the pieces of the puzzle together. Mg and/or ionic minerals are bad? I had chickpeas for dinner last night - I try to go protein-free on Sundays to lower inflammation but I forgot that yesterday except for dinner, which was rice and chickpeas. I also didn't use my blueray blockers. Apart from that, everything was right. I can't understand this.

You could say "the app doesn't work" but the truth of the matter is that I feel bad today (and I always feel better when the app reports a good night of sleep).

Even when I find some drugs/supplements that help me, I still have good and bad days.

My symptoms are joints/muscles/pain/weakness, brain fog, crashes, head pressure, slow brain, cognitive dysfunction, memory problems.

 

[CFS_for_19_years]

I hope I've got both my bowels and my sleep fixed until end of March or mid April, tops.

PS: I am up with my Mg intake (to about 1,5g now) and I am taking molecularity distilled fish oil together with Krill in the morning.

For constipation and raising you Mg levels, please see my two posts quoting the recommendations of the late Dr. Herbert Mansmann, former director of the Magnesium Research Laboratory at Jefferson Medical College:
http://forums.phoenixrising.me/inde...m-cofactors-for-absorption.57731/#post-955913
http://forums.phoenixrising.me/inde...m-cofactors-for-absorption.57731/#post-955914

FWIW, I've always heard that our bodies like to take in Mg from a variety of forms taken concurrently. Dr. Mansmann's recommendations echo that.

 

[researcher]

Hi there.

Thanks for the pointers.

I am currently taking Mg bisciclinate (200mg), Mg dimalate (1g) and Citrate if I don't defecate (1 scoop) before 5pm.

 

[researcher]

I can say that I am quite enjoying this process of understanding what is wrong with my body (I seem to know A LOT more now than 6 months ago), although 1) it is very hard and frustrating to make very little progress and 2) I know that I am only scratching the surface of what is going on. I will leave some spare notes.

Sleep

HUGE difference in my energy levels when I sleep right. The problem is that I don't know what to do to have a good night of sleep. Two days ago I traveled the country to visit my naturopathic doctor, and I slept at a hostel (in a room with a bunch of people). This is NOT common and I had to prepare myself mentally for this. Sadly I can't book an hotel room because that is expensive.

Yet, I went to bed at 11:15 or so. This is 1h15m later than usual. Even on this new bed, in a room full of people, I had the best night of sleep of the last 6 weeks. I woke up with some energy (didn't need to spend time in bed after waking up - that is remarkable!) and at 7am I had already taken shower and was buying some avocados. The app confirms those beautiful REM cycles + deep sleep that I love so very much. The day was fairly good, considering what it has been lately. It totally puzzles my mind how the heck I slept so well. Yesterday I came back home, went to bed at 10:15, did everything right... and the quality of sleep decreased significantly. I feel horrible, extremely exhausted and dizzy.

Bowel movements

I am constipated, because I am not regular and I need to fix this real quick.

What is causing it, I really have no idea. My body is totally dysfunctional so it is probably something OUTside the digestive system causing the problem.

Eggs do worsen the problem. I am currently testing a 30-day period without eggs, and things get more regular. Yet, I have VERY HARD feces, and the stool comes out in small balls (serotonin deficiency, hello!). This I can't understand or seem to control. As I think this is a priority, I am working on it. However, I fear that the cause may be so disconnected to the digestive system that my efforts won't yield no results.

What is wrong?

Kidneys, Spleen and Liver. These are the most affected systems as of today. I know that because of my symptoms, but also a lot of clinical testing (blood work won't tell me shit).

Fixing these 100% + taking care of the gut + no toxicity + awesome sleep would lead me to full remission, I think.

New things - moving forward

My naturopath finally agreed to move forward, which really excites me. I trust him A LOT and I agree with 90% of what he says, which is really great. Yet, he kinda assumed that a very clean diet and a bunch of "regular" supplements would eventually lead us to results - which I doubted from day 1. OK, now we're on the same page and we'll start a few things.

Parasites

What really excites me is that he thinks that parasites are a big problem right now for me. This excites me because 1) I haven't considered this myself and 2) even though I will have to temporarily use drugs (errrhg) it should be easy to test out. I will be on light anti-parasite drugs for the next 30-90 days.

Mitochondria

I finally have green light to mind my mitochondria. As such, I will start ubiquinol 200mg/day + PQQ + a bunch of other things, introduced progressively.

Other things

Because my naturopath has experience with LDN and knows a bunch of other techniques, I feel that I will be testing those out eventually, which excites me. However, I am really looking forward to seeing the results with the anti-parasite drugs. Crossing my fingers I will see some big worms in my stool - I'll be thrilled.


Any comments, do let me now!
Love

 

[researcher]

Supplementation regime update

Empty stomach: Ionic minerals (30 drops) and Turmeric+Bromelain* (300mg + 150mg respectively)

BF
- Vitamin D 4.000IU
- Fish Oil 2g
- Krill Oil 1 cap (about 400mg EPA/DHA)
- Cats claw 500mg
- Vitamin A 4.000IU (will start soon)
- 5HTP (will start soon)
- Essential Yang (will start soon)
- Ubiquinol 100mg (just started)
- Currently (temporary) Anti-parasite drug

Mid morning
- 1 teaspoon Sodium bicarbonate + 1 scoop Potassium diphosphate (just started)
- 1g Magnesium Dimalate
- 2 tablespoons of grounded flax seeds

Lunch
- 100mg of Ubiquinol (just started)

Mid afternoon
- 100mg magnesium bisglycinate

1 scoop of Mg citrate if I haven't gone to bathroom by 4pm (which generally DOES NOT give me a bowel movement, but I will continue doing this).

Snack
- 1g Vit. C, 500mg B5, B complex, 30mg Zinc.


- 1 teaspoon Sodium bicarbonate + 1 scoop Potassium diphosphate (just started)


Dinner
- 5HTP (will start soon)
- Currently (temporary) Anti-parasite drug

Before bed:
- Ionic minerals
- 100mg magnesium bisglycinate


Exercise late in the day seems to improve my quality of sleep (hypothesis). Will test this out.



Some notes:

- Turmeric and bromelain don't work. I tested another brand of bromelain in the past with excellent results, so I may return to that one when I finish this bottle.
- After this anti-parasite treatment I really hope to feel better. I will start using a potent anti-parasite supplement at lunch time for prevention. Not sure which one yet, I will have to research that out.
- I can't quite seem to fix my sleep, despite my best efforts. I miss the days where I went to bed wanting to sleep. These days I either go to bed absolutely crashed (which surprisingly doesnt transalte into a good night of sleep) or I go there having some energy left in the tank. This is why I will move exercise to 6pm or so.
- I will refine the mitochondrial formula as I go. In particular I will include:
--BioPQQ
--D-Ribose
--L-carnitine
--A few adaptogens



I feel tired, heavy and unwell all the time. This really really sucks. I do my very best (including having the cleanest diet ever) and it seems that nothing works great. I am yet to find something that works truly well, but I won't never give up, I will get well no matter what.

 

[researcher]

Hi y'all,

1) I am getting more and more regular (seem to fail 2 days every 10 days). What helps: some low GI fruits, 1 espresso after breakfast (I am still on my egg-free 30 day journey, not sure whether this impacts the result). I am still not on point, so this is my priority still. I feel I've got this now, and eventually I will manage to get 100% regular.
1.1) Mg citrate, flaxseed etc don't do a thing for me. :-( I still use them cuz in theory they should work, but I don't see no result. Will continue to look for and test other things until I go to the badthroom twice every day.
1.2) If you know something that may help, please do let me know. Will test steamed-cooked brocolli and Aloe Vera in the next 30 days.

2) I got way better in the past 2 weeks, but it returned to "normality" now.
2.1) Normality is felling unwell, sick, heavy, tired, felling like there is a lot on weight on my back, tense muscles and tendons all over my body, in particular my neck and upper back, dizziness + vertigo, pain in the head (not headaches) and true fatigue. I look pale all the fucking time. Fluids like water, blood, etc are not moving properly inside.
2.2) My mid and upper back have been getting worse and worse. This is the only area that truly hurts in my body. I can't even lift my shoulders, I have very acute pain on the right side (on my Rhomboid).
2.3) A few things made me improve, starting with Ubiquinol 2x 100mg day. It is quite expensive, but I won't stop taking it (probably forever).

3) I am still experiencing low sleep quality and my circadian rythm is still a little off*. This is really my second priority. I will do what I've been able to identify as something that helps: technology goes off after 8pm, I eat my last meal as early as possible (ideally close to 8pm).
3.1) Will be doing this for the entire month of April and see what results I have.
3.2) I will progressively use stuff to get the deepest sleep. Until know I've tried:
- Mg (different dosages and forms)
- Ionic minerals
- etc
3.3) Next things to test: Lemon Balm, True passionflower.

Question: have you tested other things and monitored your sleep (i.e. did you have evidence that it helped?).

*Note that I go to bed between 10pm and 11pm (will soon move to 9.45pm - 10pm and I usually need about 5 seconds to fall asleep - thank God!) and I wake up at the same time every day (between 6am and 6.30am depending on when I go to bed). I usually need about 1h30m to be functional. I think that this is a symptom that will help me determine whether I am really getting better.

4) I know that my main problems are in the Liver and the Spleen (the kidneys and adrenals are messed up as well). I think that this is affecting the rest of the body really badly, and dizziness, feeling unwell, tendons being off, etc all come from here. What I don't understand is why the heck these organs are so messed up, especially the liver. Maybe the antibiotics 5 years ago? But how come I never felt this bad before?

5) I will soon look into teas to:
- Purify the blood.
- Cleanse the lymph system and get my kidneys filtering.
- Reduce acidity.
- Promote better sleep.
- Eliminate mucus.
- Kill viruses and parasites.

Should you know any, please do let me know!

Thanks y'all.

LOVE.

 

[pamojja]

Bowel movements

I am constipated, because I am not regular and I need to fix this real quick.

Just recently got my father to try a heaped teaspoon full of ascorbic acid in a Magnsium rich mineral water. Because he had constipation for weeks and no pharmaceutical brought any relieve.

Works like a charm for him. Though the dose may needs to be adjusted individually. For example, my father found out that the Mg-water itself, or adding half a teaspoon ascorbic acid only didn't work for him. Some may need much higher doses. High-dose ascorbic acid may have many more health benefits, so always worth a trial, even without constipation.

Just good to also know that bowel-tolerance can be highly individual. Some get a bowel-flush with only a few grams, I would need 50 g spread throughout the day for the same results with vitamin C alone. So always good to start low and gradually increase the dose.

 

[Sundancer]

for constipation I recently found that old fashioned bitters are very good. They make for more bile and thus for softer stools. I like the taste too.

 

[researcher]

for constipation I recently found that old fashioned bitters are very good. They make for more bile and thus for softer stools. I like the taste too.

Thanks a lot for the comment, but no alcool in my system.

 

[researcher]

Hi y'all,

The 30 days before April 10th were the best I've had since October. The dizziness was 95% gone in that period, I had enough energy to work from home and my emotional state got up, as a result.

In the past 5 days, I've had another relapse, and I am dizzy again.

The day I got worse (trying to find patterns):
- I've changed my proteins (more fat), because I included eggs (4 whole eggs at breakfast) and salmon (vs turkey and hake).
- I've woke up way more tired.
- Too many cashews (I love these suckers!!!)
- I've been also adding a table spoon of coconut oil. I think this is OK by itself, but if there is fat in the meal then its like a fat overdose and my liver complains.

Is dizziness the way my liver and my gallblader have to shout?

Here's the status right now:

1. I am almost 100% regular now. Low GI fruits on empty stomach and before lunch do the trick. I will want to do 60 days regular before I call it a day.

• I did the 30 day egg-free experiment, and then reintroduced eggs. No change, so eggs don't constipate me! YAY cuz I love eggs. However, I feel that eggs may be a problem right now...

2. I believe my dizziness is caused by three factors, the most important being my liver. This is why I also suspect eggs may be a problem right now. My liver cannot handle fat, that is the conclusion I am arriving at... If I do beef liver, turkey and hake as the proteins, I seem to do way better. If I start doing beef, eggs, and other fats, the dizziness returns.

The second trigger seems to be stress. I got a little stressed (overwhelmed with word on April 10th...).

The third trigger seems to be my brain. My brain pathways are WAY too negative. If I get dizzy, I get these thoughts "this will be forever", "I am not getting better", "my health is totally messed up", etc. This also affects my general health, no doubt of it, but its quite surprising how I go from super positive to negative in a matter of hours...
PS: I've done the lightning process, I understand that this is a killer, but I need to take this to a whole new level.

3. CoQ10 (UbiquiNOL) seems to work well on me. I've got 20% more energy after 6 weeks on 200mg Uniquinol a day (2x100mg at breakfast and lunch). I am 90% sure I have an underlying mitochondrial issue (probably caused by antibiotics + emotions + toxins + etc) and Uniquinol seems to help a lot. This means that I must start using PQQ ASAP, which I will. I will also use grapeseed extract and some other CoQ10 potentiators.

---------------------------------------------------------
My supplement regime:

Empty stomach
Ionic minerals (30 drops)
Gingko Biloba extract
Turmeric+Bromelain* (300mg + 150mg respectively). I will soon change the latter to bromelain 500mg.

BF
- Vitamin D 4.000IU
- Fish Oil 2g
- Krill Oil 1 cap (about 400mg EPA/DHA)
- Cats claw 500mg (its over, will re-start asap)
- Vitamin A 4.000IU
- 5HTP
- Essential Yang
- Liv 52 liver support
- Ubiquinol 100mg
- Currently (temporary) Anti-parasite drug

Mid morning
- 1 teaspoon Sodium bicarbonate + 1 scoop Potassium diphosphate
- 1g Magnesium Dimalate
- 200mg Mg bisciclinate

Lunch
- 100mg of Ubiquinol
- Gingko Biloba extract

Mid afternoon
- 100mg magnesium bisglycinate
- 1g Vit. C,
- 500mg B5,
- B complex,
- 30mg Zinc.

- 1 teaspoon Sodium bicarbonate + 1 scoop Potassium diphosphate

Dinner
- 2x 5HTP
- Essential Yang
- Liv 52
- Currently (temporary) Anti-parasite drug

Before bed:
- Ionic minerals
- 100mg magnesium bisglycinate
- Gingko Biloba extract

 

[Sundancer]

Thanks a lot for the comment, but no alcool in my system.

yep, that was my thought too when I started it, but is a very small amount ( less then half a teaspoon) and body does not protest. ( that is much less then what is advised on the bottle, I only take it before breakfast) but oh my, it works real wonders on the bileflow, digestion and thus consistency of poo. Very happy with it.

 

[Sundancer]

The 30 days before April 10th were the best I've had since October. The dizziness was 95% gone in that period, I had enough energy to work from home and my emotional state got up, as a result.

In the past 5 days, I've had another relapse, and I am dizzy again.

relapses always nofun. But seems to me you're doing real well. Through the years I've learned to go ultra slow with changes in food and supplements. So that I will know what exactly triggered the reaction. So you might try to leave the eggs out again. And see what it does for you for say a week.

also relapses can come from overexertion that coincides with change of food, so then you can repeat the sequence. A slow and dreary process it is. But it works towards feeling better.

I started eating summerfood, so thing that went well last summer but haven't eaten for many months. Nw, err, was that the salad? the tomato? did I overexert ( yes) so now I will try the salad again, and later th tomato ( solo) and then I'll know and ( hopefully) eat salad with tomato as i like.

Oh, and there is no fat in eggs ( not much anyway) so if it triggers you it must be something else. For many people eggs are getting histamines loose, histamines can account for your relapse and dizziness

 

[researcher]

relapses always nofun. But seems to me you're doing real well. Through the years I've learned to go ultra slow with changes in food and supplements. So that I will know what exactly triggered the reaction. So you might try to leave the eggs out again. And see what it does for you for say a week.

also relapses can come from overexertion that coincides with change of food, so then you can repeat the sequence. A slow and dreary process it is. But it works towards feeling better.

I started eating summerfood, so thing that went well last summer but haven't eaten for many months. Nw, err, was that the salad? the tomato? did I overexert ( yes) so now I will try the salad again, and later th tomato ( solo) and then I'll know and ( hopefully) eat salad with tomato as i like.

Oh, and there is no fat in eggs ( not much anyway) so if it triggers you it must be something else. For many people eggs are getting histamines loose, histamines can account for your relapse and dizziness

Thanks Sundancer, but when I do eggs I do 4 whole eggs, so there is a lotta fat in there (smtg like 20g-25g)!

 

[researcher]

The patterns are the same: I get better for 10 days, I relapse for 3-5 days. Anyways, I am getting better overall, so I will continue to do what I've been doing.

I think I will reduce animal protein to 1-2 servings per day, though. Not for now, but maybe "soon".

I am not 100% regular yet, but I will get there for sure.

Will look into tissue inflammation, blood circulation, etc in the next months.

Right now, I will start PQQ to continue recovering my mitochondria. The next pieces are an indian herb and grapefruit seed extract. Eventually, I will move on to more advanced stuff, but for now I think this is quite enough. Before tweaking my mitochondria, I think I must reduce tissue inflammation (chronic back and neck inflammation + stiffness for over 5 years now), heal my liver, gallbladder and spleen before fully recover my mitochondria.

So in theory:
1) reduce muscle and systemic inflammation - Propolis and a few other things on my way right now.
2) heal the liver, gallbladder and sleen
3) recover my mitochondria for good (I look at CoQ10 as a great recovery tool, but that will only do 20% of the job, so right now it is a maintenance tool for me).

 

[brenda]

@researcher

Have you tried fasting for 3 days without supplements? Or at least a vegetable juice fast.

 

[researcher]

Have you tried fasting for 3 days without supplements? Or

Thanks for the reply Brenda.

I haven't, but will do soon (I will be traveling and I won't take supplements with me).

Other than that, no fast. I am thinner than ever and I only weight about 150 pounds (I use to weight 190), given that my diet is ultra clean. I am actually afraid if I fast.

Why do you ask though?