My symptoms. Do I have CFS?

[alex_555]

Hello everyone.

I'm not really sure if I have CFS or it is just a depression something else. I hope you guys can give me some hints according to my symptoms and reactions to supplements.

It all started when I was around 18 (now 30) with a mild depression and then all the other symptoms began.

Symptoms:

1. sudden overwhelming sleepiness at some point after noon (mostly after work and not related to meals) forcing me to take a nap (eyes closing on their own) - every other day, especially on weekends when I slept longer than 8 hours
2. sudden tiredness making me yawn, that can last for hours and is sometimes followed by sleepiness
   
3. tiredness (yawning) starting during exercise - occurs sometimes
4. after a high intensity workout (resistance training or running) mostly I feel really good but it is sometimes followed by really bad sleep, heavy night sweating, high heart rate, high body temperature, the next day massive brain fog and tiredness - happens mostly when I already feel tired after a workday - lasts only a day
5. not feeling fully rested after sleep - 99% of all nights since 12 years
6. regularly waking up at night at almost exactly 4 am – mostly during times of higher stress
7. often lack of concentration due to mild brain fog
8. often low motivation
9. often lowered mood and kind of depression - through the years I had some moderate depressive episodes
10. alcohol hangovers can lower my mood and energy sometimes for days and weeks and sometimes just only for some hours
11. sometimes anxiety
12. difficulty finding words (getting worse)
13. lowered libido

other physical conditions:

• - eczema around the anus since 8 years. during the years had it also on other body parts but it disappeared on its own
• - white tongue, although I clean it every morning and evening (happens ultra-fast when I drink beer), can't remember when it started
• - mucous in the throat after the night (mostly green, not always) - maybe since ten years

Although my symptoms maybe sound quite severe, most of the time I’m feeling fine. the biggest impairment for me is the lack of motivation and the low mood, which changes unexplainably form day to day. Of course the tiredness, but it's only a big deal at work or after work.

I tried some supplements during the years. I will just mention those which had the biggest effect (pos and neg)

• gaba -> could not sleep all night long, never tried it again
• tyrosin -> somehow enhanced my motivation
• ashwagandha -> wow, makes me feel super calm (take it almost daily)
• cholin -> depressive symptoms
• MethylB12 (without folate) -> lowered mood
• arginine + ornithine -> depression
• omega 3 -> midly improves my mood
• urdine + dha -> really boosted my motivation
• myo-inositol -> really anxiolytic even at small doses – suddenly stopped working
• phosphatidylserine -> wow, high motivation, energy and enhanced cognitive function – discontinued it because I thought it would reinforce the “next day crashes” after workouts

...and at the end the best thing: methylfolat 800mcg (started it with hydroxylB12, although I have no B12 deficiency) After the first day I took it, ALL my symptoms where gone (but it just lasted 2-3 days). Since then the improvements are at least by 50%, which is also great. I take it since about a month and since a week I trying it with MethylB12 (although nutrahacker says I should avoid methyldonors). I think it improved my concentration even more, but the methylb12 changes my personality somehow and I have a strange mood (sometimes good sometimes bad). Ashwagandha doesn’t seem to work anymore since I introduced MethylB12. I also don't experience the neurological brightening with methylB12, people talking about (tried up to 2mg under the lip).


Below I attached are my methylation related snps and my nutrahacker report. Despite MTHFR 1298C homo, I don’t see any rare (and well reasearched) mutations.

I hope maybe someone sees a pattern here or at least give me hint what to look for. Thanks for your comments.

 

[GreyOwl]

Hi @alex_555 , I can't answer your question sorry, but the physical conditions you mention make me wonder whether you have a systemic candida (or other fungal) infection? Has that been investigated?

 

[Firefly_]

I second greyowl, I also immediately thought candida based on the tongue/ beer comment. Can't comment on the rest.

 

[taniaaust1]

I too with your white tongue wonder about candida. Have you seen a naturopath for advice...

Although my symptoms maybe sound quite severe

this may surprise you but actually they don't sound severe at all as most of us with ME/CFS have a larger range of symptoms (you do not mention lots of the common symptoms we get). 25% of us are housebound or bedbound due to ME/CFS. ME/CFS is a quite severe illness to have so if you have ME/CFS I'd put you on the very light scale of it
http://wwcoco.com/cfids/bernesx.html.

Some of your symptoms though are suggestive of something like ME/CFS eg going feverish after exercising certainly isn't something caused by depression, though you don't mention other very common symptoms in this eg at least 3/4 of ME/CFS patients get headaches. To the question do you have CFS? I myself wouldn't like to answer it as whether you do have mild ME/CFS or not isn't clear to me..

with symptom 1.. your body clock (circadian cycle) could be out of wack.. that would then lead to not sleeping well and hence then not feeling rested after sleep etc Lack of sleep then leads to brain fog, concentration issues etc.

low motivation from ME/CFS comes from feeling tiredness and unwellness.. where you actually want to be doing the things but are too exhausted and sick to do so.

most of the time I’m feeling fine. the biggest impairment for me is the lack of motivation and the low mood, which changes unexplainably form day to day. Of course the tiredness, but it's only a big deal at work or after work.

If someone who has ME/CFS was working, I wouldn't expect them to be feeling "fine most of time". Working is extremely hard for ME/CFS patients to do, most of us cant work or can only work part time at most.. Working tends to make ME/CFS people usually quite ill, those of us who work, struggle majorly through every day. ME/CFS exhaustion/PENE is nothing like tiredness people may feel after work. I'd think it is normal for healthy people to often feel tired after work. From that comment, if I was a dr I wouldn't give you a ME/CFS diagnoses even of having it mild.

Some ME/CFS diagnostic criteria state that the persons activities levels have dropped by about 50% due to the illness, it just doesn't sound like you have been impared much by your fatigue and fatigue is in most illnesses.

at the end the best thing: methylfolat 800mcg (started it with hydroxylB12, although I have no B12 deficiency) After the first day I took it, ALL my symptoms where gone (but it just lasted 2-3 days).

If you have ME/CFS, one wouldn't expect it to suddenly be all symptoms gone (even for a few days) just from taking methylfolate and B12.. . Sounds like you should see someone who is an expert inMTHFR mutations seeing you have two mutated gene copies as there may be other things you can trial which could help.

 

[alex_555]

@taniaaust1
thanks for your comments
based on your explanation, I would probably agree with you that that if it is CFS at all, it’s very mild compared to other people suffering from it. However, the tiredness I was talking about isn't just the normal exhaustion from a long work day or due to lack of some sleep. I can clearly tell the difference, because once in a while I did have days where my energy levels were up and the exhaustion from work or maybe the lack of sleep felt completely different and bothered me not really much.
low motivation for me is probably a dopamine related thing, because of the reaction I had to uridine or tyrosine. So if it's not a direct neurological consequence of CFS, it is probably related to something else.


@GreyOwl @Firefly_
Of course over the years researching for causes of my condition, I stumbled upon candida. I did a stool analysis and it came back negative for candida. I've also tried anti candida supplements and I absolutely didn't felt a thing.
Are there any other analysis methods? Or maybe it's just not in my gut? (possible?)

Regarding the mucus, a doctor found some bacteria in my throat (which doesn’t belong there). I took antibiotics for a while but they didn't help me.

An interesting thing regarding my "sudden overwhelming sleepiness". It was reduced by maybe 50% when I started to use interdental brushes daily to really clean up the interdental spaces. I did use floss for time to time but the brushes are superior by a magnitude. I know it sounds quite stupid and not really plausible, but the timing my symptom went down and when I started using those brushes just matches too good to be a coincidence.

 

[panckage]

It certainly sounds like a case of mild CFS. It's interesting you can do high intensity exercise though... Do you have to take drugs before you can exercise? Also what range is your heart rate when exercise?

 

[alex_555]

It certainly sounds like a case of mild CFS. It's interesting you can do high intensity exercise though... Do you have to take drugs before you can exercise? Also what range is your heart rate when exercise?

No, I don't take any drugs nerver did. Even if I feel tired, I kind of force myself to go to the gym (and that happens a lot). I've never measured my heart rate during exercise, but I would say it's in the normal range. However I begin to sweat really easily and more than other people. I do resistance training since I'm 16. Interesting fact is, since I introduced methyfolat(+hydroxylB12) I can easily lift almost 10-20% more weight on almost every exercise and it doesn’t feel as exhausting as before.

I'm kind of afraid that it will stop working for me.

 

[*GG*]

It certainly sounds like a case of mild CFS. It's interesting you can do high intensity exercise though... Do you have to take drugs before you can exercise? Also what range is your heart rate when exercise?

I have a really good friend I know very well who has been ill as long as me and he can do intense exercise!

GG

 

[GreyOwl]

@GreyOwl @Firefly_
An interesting thing regarding my "sudden overwhelming sleepiness". It was reduced by maybe 50% when I started to use interdental brushes daily to really clean up the interdental spaces. I did use floss for time to time but the brushes are superior by a magnitude. I know it sounds quite stupid and not really plausible, but the timing my symptom went down and when I started using those brushes just matches too good to be a coincidence.

Do you think a trip to the dentist could be a good idea? There are a couple of threads on here about gut dysbiosis and resistant starch which might be helpful to you as well.

 

[Sea]

Some thoughts in no particular order
Have you ever had the anal excema examined/swabbed/biopsied? Anal strep is one possibility. Food allergies or Celiac disease are others.

The fact you felt such a dramatic difference quite quickly with methylfolate points to a nutritional deficiency, which can happen even if your diet is not deficient. Some people have problems with absorption/metabolism which can be genetic, because of intestinal parasites, infection or food intolerances.

Have you been examined for sleep apnoea? Narcolepsy? Any other sleep disorder?

Mucus in the throat = post nasal drip. Have you been examined/swabbed for chronic sinus infections? Strep? Mycoplasma?

Do you live with mold?

Your response to exercise is not typical of ME/CFS but it isn't normal either. I would think you should pursue whether you have a low grade chronic infection somewhere. Have you had blood tests for CRP or ESR which often indicate inflammation?

 

[*GG*]

The fact you felt such a dramatic difference quite quickly with methylfolate points to a nutritional deficiency, which can happen even if your diet is not deficient. Some people have problems with absorption/metabolism which can be genetic, because of intestinal parasites, infection or food intolerances.

Hmm, I was thinking, how are levels of what you need determined? the same way as with blood tests, you are in the "normal range", so it must be something else? yeah, lets treat to testing numbers, and not your actual symptoms!

GG

 

[Rlman]

waking up at night can be from adrenaline due to low blood sugar due to low cortisol due to adrenal fatigue. but don't know if adrenal fatigue covers all your symptoms

 

[alex_555]

Some thoughts in no particular order
Have you ever had the anal excema examined/swabbed/biopsied? Anal strep is one possibility. Food allergies or Celiac disease are others.

The fact you felt such a dramatic difference quite quickly with methylfolate points to a nutritional deficiency, which can happen even if your diet is not deficient. Some people have problems with absorption/metabolism which can be genetic, because of intestinal parasites, infection or food intolerances.

Have you been examined for sleep apnoea? Narcolepsy? Any other sleep disorder?

Mucus in the throat = post nasal drip. Have you been examined/swabbed for chronic sinus infections? Strep? Mycoplasma?

Do you live with mold?

Your response to exercise is not typical of ME/CFS but it isn't normal either. I would think you should pursue whether you have a low grade chronic infection somewhere. Have you had blood tests for CRP or ESR which often indicate inflammation?

- I've been to 3 doctors regarding my eczema, they all wanted to prescribe cortisone. No tests at all, they just looked.
- I was never examined for sleep issues. People I've slept in one bed with, never reported anything unusual to me.
- The result of my throat examination was that I have a mild infection with Staphylococcus aureus. I took antibiotics, but they didn't resolved that issue.
- I did lived with mold for many years. In that period I also lived at other places for several months straight and since a year moved out of that moldy place and I wouldn't say it changed something in my symptoms.
- I don't know for sure if my blood was tested for inflammation markers over the years. The few reports I have, don't mention CRP or ESR. I was once tested for folate , b12 deficiency. Both were OK.
- I have changed my diet. I eat lots of vegetables and also try to avoid sugar, wheat and diary. But never noticed a big difference with that diet or any intolerances.

I just looked up my stool analysis form 3.5 years ago. I was tested positive for a parasite (Blastocystis) at that time (probably still?). I didn't found much information around that time about that thing and my doctor also didn't mentioned it. Now there is a lot more information. I just read that it can cause fatigue, anal itching or depression among others regarding digestion (which I don't have problems with).
I definitely have to rule that one out as a cause.

waking up at night can be from adrenaline due to low blood sugar due to low cortisol due to adrenal fatigue. but don't know if adrenal fatigue covers all your symptoms

Is adrenal fatigue a real thing? I have read some controversial opinions about it.
When I wake up and don't fall back to sleep right away, I feel often over anxious about some current problems in my life.
I also thought it might be related to cortisol, because of the reaction I had to phosphatidylserine. It made me wake up at 6am for several weeks. However it supposed to lower cortisol. I had the same effect when is first tried methylfolat. Normally I never wake up at 6am by myself. And it is definitely related to stress (one more cortisol hint), because it appears during stressful times and mostly on workdays.

 

[alex_555]

Do you think a trip to the dentist could be a good idea? There are a couple of threads on here about gut dysbiosis and resistant starch which might be helpful to you as well.

I don't have cavities or problems with my teeth since several years. I go to the dentist for a check-up at least once a year. I tried resistant starch last year. It was terrible. Probably fed the wrong bacteria. So gut dysbiosis could be a thing. I have planned to do another stool and parasite analysis in the next weeks.

Thanks to all commenters so far. I gain some motivation to do more testing. Luckily nowadays I can order some lab test without a doctor. It is terrible to convince the doctors that something isn't right with me.

 

[GreyOwl]

Good luck @alex_555. @Sea's suggestion of a sinus infection is really good, that could be the source of a resistant staph. Re: the eczema, have you tried an anti-fungal?

Your meth panel has one red flag which maybe accounts for your response to methylfolate. There is a lot on here about that which might help you as well.

 

[panckage]

No, I don't take any drugs nerver did. Even if I feel tired, I kind of force myself to go to the gym (and that happens a lot). I've never measured my heart rate during exercise, but I would say it's in the normal range.

Wow assuming you do have CFS which your symptoms fit very well with, you can take consolation in being the highest functioning person on this board I have read about

I can only exercise if I take ritalin. If I don't my heart rate stays relatively low and I just feel like I'm going to pass out because my body is not providing enough energy, like a car stuck in first gear

Hopefully you can connect with others here who have the similiar experiences as yours!

 

[taniaaust1]

- The result of my throat examination was that I have a mild infection with Staphylococcus aureus. I took antibiotics, but they didn't resolved that issue..

were you retested to make sure the antibiotics got rid of it?

I had that in my nose like 25% of people do. Those who do have ME/CFS though often get a different variety of it, a toxin producing kind of Staph. The Staph I had they actually tested first against certain antibiotics to make I was given the right one. It was actually resistant to 4/5ths of the drugs they tested against it. Staph can be quite hard to get rid of. I was told with even using an antibiotic which worked against the type I had that I may need multiple treatments.

 

[Hip]

after a high intensity workout (resistance training or running) mostly I feel really good but it is sometimes followed by really bad sleep, heavy night sweating, high heart rate, high body temperature, the next day massive brain fog and tiredness - happens mostly when I already feel tired after a workday - lasts only a day

This is a classic ME/CFS symptom. It's called PEM (post-exertional malaise), and is such a unique symptom of ME/CFS that it provides a good indication that you may well have ME/CFS.

difficulty finding words (getting worse)

This is also classic ME/CFS

white tongue, although I clean it every morning and evening (happens ultra-fast when I drink beer), can't remember when it started

That white tongue coating is probably geographic tongue (benign migratory glossitis). It's not a symptom of ME/CFS per se, but I myself developed geographic tongue after catching the respiratory virus that triggered my ME/CFS.


If you want to accurately check whether you have ME/CFS, try seeing whether your symptoms match the strict CCC definition of ME/CFS, or the less strict and simpler CDC criteria.

 

[alex_555]

Good luck @alex_555. @Sea's suggestion of a sinus infection is really good, that could be the source of a resistant staph. Re: the eczema, have you tried an anti-fungal?

Your meth panel has one red flag which maybe accounts for your response to methylfolate. There is a lot on here about that which might help you as well.

regarding anti fungal, you mean something like Nystatin? I never tried it. I tried anti candida supplements, but I didn't felt a thing. I also tried a anti fungal cream, but I think it had litte to no effect (I can't really remember)

Wow assuming you do have CFS which your symptoms fit very well with, you can take consolation in being the highest functioning person on this board I have read about

I can only exercise if I take ritalin. If I don't my heart rate stays relatively low and I just feel like I'm going to pass out because my body is not providing enough energy, like a car stuck in first gear

Hopefully you can connect with others here who have the similiar experiences as yours!

Maybe my body is kind of used to it. I do sports on a regular basis nearly half of my life.
thanks for your encouraging words.

were you retested to make sure the antibiotics got rid of it?

I had that in my nose like 25% of people do. Those who do have ME/CFS though often get a different variety of it, a toxin producing kind of Staph. The Staph I had they actually tested first against certain antibiotics to make I was given the right one. It was actually resistant to 4/5ths of the drugs they tested against it. Staph can be quite hard to get rid of. I was told with even using an antibiotic which worked against the type I had that I may need multiple treatments.

The lab tested for resistancies and I took a "working" one. Sadly not really working in my body. no further testing was done. When I was around 22 I got a Pertussis infection and was treated with a antibiotic. during that treatment I had no mucus issues.

Did you get rid of your infection and did you felt improvements afterwards?

 

[alex_555]

This is a classic ME/CFS symptom. It's called PEM (post-exertional malaise), and is such a unique symptom of ME/CFS that it provides a good indication that you may well have ME/CFS.



This is also classic ME/CFS



That white tongue coating is probably geographic tongue (benign migratory glossitis). It's not a symptom of ME/CFS per se, but I myself developed geographic tongue after catching the respiratory virus that triggered my ME/CFS.


If you want to accurately check whether you have ME/CFS, try seeing whether your symptoms match the strict CCC definition of ME/CFS, or the less strict and simpler CDC criteria.

This whole thread makes me sad...

I just googled some images. My tounge dosn't look patchy. The white layer starts from the throat and will cover the whole tounge if I don't clean it regulary.