Big mystery that overlaps/making me feel like I've got CFS.

[Jakub2000]

Hi, my name is Jakub I am a 21-year-old male Studying Mathematics in Uk. I used to be very active and was/still health orientated so I rarely drank alcohol/never took drugs or smoke. I used to be able to run a marathon and I was a Gym lover. In late 2019 my strange issues began and here's the breakdown of my issues.

Here is a Brief Story of my problems:

I began consistently losing energy which was very apparent while I went outside or went to the gym. I didn't think much of it and I started resting more and also eating more while still eating healthy foods. (non-vegan). Then came very bad constipation that recurred for months and I tried laxatives, very expensive probiotics, and elimination diets including the carnivore diet(currently I eat carbs again). while the constipation issues persisted my energy began falling more and more and at this point, I developed pretty bad insomnia(not sleeping for 2 days straight no matter what I did.
I went to my GP as it's obviously very concerning and I got prescribed omeprazole for the reflux and got told it all in my head (which I believed at the time and hoped it will go away).as weeks went past I began noticing more issues like weird heart issues and the delayed stomach emptying became very apparent as even after eating bread, it stayed in my stomach for hours and hours and came up after drinking water. I did some research and the closes thing I could find is named "gastroparesis" which I went and told my GP about but they refused to investigate further and I got prescribed antidepressants. I have since quit all medication as it's not helping even the slightest and I feel helpless. I will be traveling to a different country to spend thousands of British pounds on private blood tests and doctors to hopefully figure out what it could be.


current Symptoms :

insomnia characterized by random waking up/not enough sleep and when I sleep 6/7h it's unrefreshing.

Slow gastric emptying

slow /hard heartbeats - sinus bradycardia type of symptoms but not confirmed yet. this also causes headaches, slight confusion, and difficulty breathing.

floating stools and poorly digested food matter(even non-fiber foods)

very weak mentally as well as physically so the best I can do I go for a walk with breaks, I lay in bed a lot and stay at home most of the days in the week.

depression ( most likely as a result of symptoms but the source of those issues may also play a role in my depression).

calf twitching especially after I got for a walk.

weird chemical breath after I do some movement like go for walk and walk indoors, I notice it.

Blood work done(all normal and in range for US/UK and European ranges):
Homocysteine
b12
iron
d3
zinc
copper
CRP
ANA
all thyroid biomarkers (done 3 times privately)
H.pylori
Candida
parasites
elastase
calprotectin
zonulin
electrolytes including calcium
parathyroid
basic urine markers like nitrates and ph
GFR
creatinine
Cortisol
DHEA
Gastric auto-antibodies
testosterone - on the low side
serum magnesium
genetic testing
Heavy metals in hair (very expensive test)-very low potassium but my diet is rich in potassium? However not sure how hair potassium correlated to actual potassium in the body as the serum is normal.

I have learned a lot of medicine over the year and I'm still searching in despair as I feel ruined.

my theory:

Need to check for:
Pheochromocytoma
maybe its something to do with noradrenaline

vagus issues?

I would like to thank you for reading this and any ideas are welcome and considered as the more ideas the better; Ideas relating to possible testing to do or what it could be?

thank you.

 

[Jakub2000]

I forgot to add that i also tested fastign glucose and Hb1ac

 

[Pyrrhus]

Then came very bad constipation that recurred for months and I tried laxatives, very expensive probiotics, and elimination diets including the carnivore diet(currently I eat carbs again). while the constipation issues persisted my energy began falling more and more and at this point, I developed pretty bad insomnia(not sleeping for 2 days straight no matter what I did.

For what it's worth, constipation-predominant Irritable Bowel Syndrome (IBS-C) is very common in the ME community. It is thought to be due to dysautonomia of the autonomic nerves that control the flow of food in the intestines.

I did some research and the closes thing I could find is named "gastroparesis" which I went and told my GP about but they refused to investigate further and I got prescribed antidepressants.

For what it's worth, gastroparesis is very common in the ME community. It is thought to be due to dysautonomia of the autonomic nerves that control stomach emptying. It often comes with different types of reflux and spontaneous vomiting. I describe the three different types of reflux here:
https://forums.phoenixrising.me/thr...-away-after-a-proper-meal.82431/#post-2326982

floating stools and poorly digested food matter(even non-fiber foods)

For what it's worth, this sounds to me like it might possibly be Exocrine Pancreatic Insufficiency (EPI) which occasionally occurs in the ME community. The pancreas normally secretes digestive enzymes into the intestines which breaks down fatty food. If your pancreas is not secreting enough enzymes to break down the fatty food, your stools may seem oily, extra smelly, and might float. I believe there are some supplemental enzymes that help with EPI, but I don't know much about them:
https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

calf twitching especially after I got for a walk.

For what it's worth, muscle twitching and fasciculations are quite common in the ME community.

Hope this helps.

 

[godlovesatrier]

When I was in a downward dip my muscle twitching was definitely bad, after exertion I just used to lie there twitching....not good. Thankfully that's all stopped over the last 12 months, but I had other things get worse.

I was just going to wish you loads of luck with your search as I am in the UK too. Where will you fly to and how did you find the foreign clinic? I've considered flying if I get the energy, as the UK medical infrastructure is inadequate and the medical care for ME people is dreadful. Although supposed to be worse in Germany I think.

 

[godlovesatrier]

Oh and have you had your stomach acid checked? You could try solgar hcl tablets before meals for a week just to see if it improves digestion. Although that's focussed on the stomach. If there's an issue post stomach only thing I can think of there is parasite's or bacterial infections polori? (Cannot quite remember the name). Any half decent stool test will check for it anyway.

Not sure if you've done those already?

 

[Judee]

Have you ever tried Caprylic Acid?

It's the thing that helped me and a family member the most with gastric issues including constipation for my family member.

The brand we used is T.S. Neesby Mycopryl however the brand on Amz uk is not the same and has some ingredients that could be questionable so you could just look for another caprylic acid supplement.

As an added benefit, it kills Candida as well and it seems to do it in a very gentle way. Candida could be adding to some of your other issues as well.

Caution: It is sometimes made from coconut so if you have an allergy check with the manufacturer. T.S. Neesby told us theirs is made with palm oil when we called them several years back.

Avoiding my food triggers and Mycopryl tones down my IBS by about 85-95%. (I talk about my trigger foods in this post: https://forums.phoenixrising.me/threads/gi-pain.83951/#post-2339545)

 

[godlovesatrier]

Judee has just reminded me. If you did feel you had a bacterial issue in the gut. Lauricidin might be rather potent and should absolutely regulate any constipation. I suffer from ibs-d if I have it at all.

Not too sure where you should start though. Stool tests are about £400. That should answer some questions possibly. Unless you decide to get this done in another country. Which might be good too. Look forward to hearing more about this as I'm very intrigued to know more

 

[wabi-sabi]

I did some research and the closes thing I could find is named "gastroparesis" which I went and told my GP about but they refused to investigate further and I got prescribed antidepressants.

So sorry to hear you are going through this! It certainly sounds to me like you are having gastroparesis, but it would be very helpful if you could get the proper testing from a medical person.

Here is a link that explains the condition and gives info on correct testing:https://rarediseases.org/rare-diseases/gastroparesis/

I was able to get testing for this and see a dietician that gave me good advice on what to eat to manage it, and it does actually help a bit when I eat the right things. Yours definitely sounds worse than mine, and it sounds like you are having GI problems more than just gastroparesis. I don't know what's going on there, but I know you need some more medical answers and not just antidepressants.

 

[wabi-sabi]

In the UK, can you go to a GI specialist yourself or can you only get there with referral from your GP?

 

[LINE]

My 2 cents:

Chemical breath - possible sulfur reducing bacteria in the gut or other unwanted gut bug. Yes, as godlovesatrier suggested, caprylic acid is a good choice.

Gerd - magnesium deficiency -choose a good form such as UltraMag from Source Naturals.

Undigested food is IBS, could be bad pathogens in gut or as pyrrhus suggests an enzyme issue.

 

[wabi-sabi]

If your GP won't give you a GI referral, you can try asking for a dietician referral. A dietician should also be able to recognize that something unusual is going on based on our symptoms and may provide another voice to the doc that you need real testing and not the brush off.

 

[Jakub2000]

My 2 cents:

Chemical breath - possible sulfur reducing bacteria in the gut or other unwanted gut bug. Yes, as godlovesatrier suggested, caprylic acid is a good choice.

Gerd - magnesium deficiency -choose a good form such as UltraMag from Source Naturals.

Undigested food is IBS, could be bad pathogens in gut or as pyrrhus suggests an enzyme issue.

Have you ever tried Caprylic Acid?

It's the thing that helped me and a family member the most with gastric issues including constipation for my family member.

The brand we used is T.S. Neesby Mycopryl however the brand on Amz uk is not the same and has some ingredients that could be questionable so you could just look for another caprylic acid supplement.

As an added benefit, it kills Candida as well and it seems to do it in a very gentle way. Candida could be adding to some of your other issues as well.

Caution: It is sometimes made from coconut so if you have an allergy check with the manufacturer. T.S. Neesby told us theirs is made with palm oil when we called them several years back.

Avoiding my food triggers and Mycopryl tones down my IBS by about 85-95%. (I talk about my trigger foods in this post: https://forums.phoenixrising.me/threads/gi-pain.83951/#post-2339545)

i got caprylic acid as a mct oil and it does nothing for me except insane stomach pain if i over do it