List of my symptoms. Am I a rare case?

[Mad Hatter]

Hi. I am a 22 years-old french young man. I believe I have a rare form of CFS. I want to know if other people share my symptoms or if I'm alone in my case. Know that I have never been diagnosed with CFS (nor with anything else), but I experience it. So, I am writing a list of my symptoms with the approximative order in which they appeared. These symptoms must not have a local origin from a local problem, because they all come and go together.

• My first two symptoms appeared in my childhood, when I was 8 or maybe even sooner. Since then, I'm hyposalivating. I can't eat meat, especially chicken, without a sauce. If I eat dry food, I often hurt myself.

• Since the same age, I have had bad breath. Shit breath if you pardon my french. It comes and goes. After a lot of research, I believe it is due to food overstaying in my stomach.

• Since my pre-teens, I've had progressively lower libido and lower ability to get hard. Today I have a flat sex drive and am impotent. I also lost some sensibility. I experience the same symptoms as people with Post-SSRI sexual dysfunction, even though I never took any medication. I also feel it is getting harder to fully empty my bladder.

• Since my teens, I have had digestive issues. Sometimes diarrhea, sometimes constipation. I can see my stool are yellow-ish and float which means I have trouble digesting lipids. I tried everything diet and fasting wise, and nothing helped. Which is a relief, because now I just eat what I please.

• Since my teens, I have experienced progressively worse fatigue. Today, I can't have a job. I do not have PEM, I am just extremely tired.

• Since my teens, my memory and cognition are progressively getting worse.

• Since I was 21, my skin got so dry that I have a really hard time shaving myself. In fact, my whole body is dry except for my eyes. Dry mouth, dry skin, dry genitalia. The cause of this general dryness is yet unknown.

• I rarely am sick. I am feverous maybe once a year. I don't suffer from any allergy. On the other hand, I have genital and labial herpes that keeps coming back. I often have mouth canker sores. In winter, I have a constant sore throat, to the point where it becomes difficult to swallow. I have the impression my immune system is not working, even though I am rarely sick. How is this explainable? It may be a core question to my disease and to other people's CFS. I have seen that a lot of people struggle with herpes.

• I always had Raynaud's.

• I look like I've escaped the cemetary. I do not look healthy. My last coworkers thought I was a regular drug user. I am often pale and have dark circles under my eyes.

My thyroid is doing fine. My free T3 is in fact slightly above the range. I should have a lot of energy and sex drive, but I do not.

What is interesting about these symptoms, is that they come and go. And whatever makes them come and go happens during the night. My nights define my days. If in the morning I have an erection (happens 3 times a year), I know I'm gonna look healthy, I know I'm gonna have energy today, I know everything will be fine. But If I wake up feeling dead, I know the day is gonna be hard. All my symptoms come and go at the same time, and it's determined during the night. Because of this I thought I suffered from sleep apnea. Even though I did not test for it (I plan to), I believe after some research that it is not the case. I am very slim, I don't snore and sleeping positions don't change a thing.

18 months ago I woke up and I felt sooo good for a day or two. I remember everything. Everything worked fine in my body. I knew it was my normal state. Because of this, I have hope that I can heal. I know (and all the blood tests prove it), that everything in my body is fine, BUT one little thing that needs to be adressed.

Another interesting thing is that I experience the hangover effect. For those who don't know, it means that I have a "reverse hangover", and that I experience partial relief of my symptoms the day after drinking alcohol.

If you share most of my symptoms, please post and tell me what worked for you.

Thanks for reading my long post!

 

[hapl808]

All my symptoms come and go at the same time, and it's determined during the night. Because of this I thought I suffered from sleep apnea. Even though I did not test for it (I plan to), I believe after some research that it is not the case. I am very slim, I don't snore and sleeping positions don't change a thing.

Your symptoms differ from mine, but sleep apnea seems very worth testing for since it is very treatable. I don't think slim and lack of snoring necessarily precludes the presence of sleep apnea - and I believe one of the hallmark symptoms of sleep apnea is bad breath, dry mouth, etc. I would investigate this as soon as you're able.

 

[Mad Hatter]

I would investigate this as soon as you're able.

I will when I will get some money. A diagnosis for sleep apnea would be the best news of my life

 

[Rufous McKinney]

Your symptoms are a bit unusual but not overwhelmingly so.

I had ME for decades without classic PEM. We can argue about that, but your symptoms sound like neuro-immune and or autoimmune type.

I got some help using chinese herbs I obtain from an expert herbalist. They view these types of things as imbalances, energetic and otherwise. I know I get some help in reducing the dryness. My entire body is very very dry (except I experience IBS-d type symptoms also).

I often call myself The Sahara Desert....

 

[Mad Hatter]

Your symptoms are a bit unusual but not overwhelmingly so.

I had ME for decades without classic PEM. We can argue about that, but your symptoms sound like neuro-immune and or autoimmune type.

I got some help using chinese herbs I obtain from an expert herbalist. They view these types of things as imbalances, energetic and otherwise. I know I get some help in reducing the dryness. My entire body is very very dry (except I experience IBS-d type symptoms also).

I often call myself The Sahara Desert....

Well it's exactly what I thought for a time, but after passing an auto-immune blood exam, no significant amount of auto-antibodies were found, happily so. So what I have is not due to an overreactive immune system. I'm thinking the contrary: it may be due to a non-functionning immune system which can't get rid of some infections.

Also, I should have said that I underwent a lot of blood exams and all came back normal: sex hormones, thyroid, auto-immunity, iron metabolism, cortisol, vitamins, etc. I can't find any blood biomarker for my disease.

 

[Tsukareta]

Hello,your symptoms look a bit similar to SIBO with possible vitamin deficiencies, but it sounds like you don't experience food allergies or sensitivities ? I wonder if candida or mold exposure could also be involved too due to your sore throat, if its happening more in winter it could be mold related, but also vitamin D ? have you ever done a full stomach test ? "Rajsree Nambudripad " on Youtube has a few decent videos about the stomach issues and the tests that doctors can use. I can actually relate to some of your symptoms, I had many random problems since 2020 that seem unrelated to my core ME/CFS and at this point I believe they are driven by some type of dysfunction of the stomach or its microbiome. My memory and brain function has become very poor lately and I have less energy and exercise tolerance than last year, I also suffer episodes of dehydration that are probably neurogenic.

That odd sore throat you mention reminds me of what I experienced in mid 2020 when exposed for a long period to a pool of stagnant water where bacteria was probably growing, I also had nausea and the sore throat got worse when the seasonal hayfever kicked in, I experienced the same sore throat suddenly last autumn when I was crossing the road at a place and time where there was so much traffic and it was making a lot of pollution in the air that seemed to be hanging around due to atmospheric conditions, the burning feeling lasted for over an hour and it was not Asthma.

You said your body is dry, I have the same problem but also sometimes excessive tears e.g. if its cold and windy, my skin got very dry in winter and I had trouble healing from wounds, last year I had a lot of bruises that appeared without me realising I hurt myself enough to cause it, both of these things can be caused by a vitamin deficiency but I have also heard of an autoimmune disease that causes dry mouth. ( Sjögren's syndrome ) .

Have you lived in different environments during your illness ? did it make a difference ? I find that diet changes actually does make a noticeable difference to my symptoms ( this year, after things got a lot worse ) but doesn't cure the issue.

 

[Treeman]

Have you had your immunoglobulin levels checked? If not it maybe beneficial to do so.

 

[Mad Hatter]

Have you had your immunoglobulin levels checked? If not it maybe beneficial to do so.

I think not. I got my Beta-2-Microglobulin tested but I guess those are two different things.

So what are immunoglobulin levels? You check the amount of each main antibodies?

I was precisely curious as to what test I could undergo to have further information about my immune system. Because for now I only had my "leucocytes" checked and everything seems normal!

 

[Mad Hatter]

Hello,your symptoms look a bit similar to SIBO with possible vitamin deficiencies, but it sounds like you don't experience food allergies or sensitivities ? I wonder if candida or mold exposure could also be involved too due to your sore throat, if its happening more in winter it could be mold related, but also vitamin D ? have you ever done a full stomach test ? "Rajsree Nambudripad " on Youtube has a few decent videos about the stomach issues and the tests that doctors can use. I can actually relate to some of your symptoms, I had many random problems since 2020 that seem unrelated to my core ME/CFS and at this point I believe they are driven by some type of dysfunction of the stomach or its microbiome. My memory and brain function has become very poor lately and I have less energy and exercise tolerance than last year, I also suffer episodes of dehydration that are probably neurogenic.

Hello.

I do experience a lot of symptom that people with SIBO experience too (although my case is worse), but I do not believe in SIBO as an idiopathic disease. If SIBO or gut dysbiosis actually exists, I believe it must be due to a deeper issue, e.g. a lack of bile or stomach acid production (both regulates the gut micriobiome) or constipation. I believe fixing the deeper issue automatically cures the SIBO. That is only my personnal opinion on the matter.

As you said, I do not suffer from food allergies or sensitivities. My digestion worsens and betters itself, with the time of the year and unknown factors, but after years of experimentations I'm pretty sure what I eat has nothing to do with my health issues.

I have had my vit. D checked and it was in normal range, although I cannot find the blood exam results again. I believe that my symptoms worsen in winter due to temperature and mold. That is why I think that I have an issue with my immune system. It is not capable of fighting off the diseases I get in winter, and so my symptoms get worse.

Speaking of that, I don't think we share the same sore throat issue. Mine doesn't appear and go away just like that, on the contrary it stays for all winter.

You said your body is dry, I have the same problem but also sometimes excessive tears e.g. if its cold and windy, my skin got very dry in winter and I had trouble healing from wounds, last year I had a lot of bruises that appeared without me realising I hurt myself enough to cause it, both of these things can be caused by a vitamin deficiency but I have also heard of an autoimmune disease that causes dry mouth. ( Sjögren's syndrome ) .

I know exactly the feeling! Your body's so dry you feel like a seventy year-old. Hands dying off... Can't heal wounds, easily bruised, etc. I heard about Sjögren's syndrome but I do not have auto-antibodies so it must not be it. I tried all vitamins and it musn't be it neither. So I'm curious as to what causes my dryness. You says yours is probably neurogenic, what do you mean by that?

Have you lived in different environments during your illness ? did it make a difference ? I find that diet changes actually does make a noticeable difference to my symptoms ( this year, after things got a lot worse ) but doesn't cure the issue.

Winter, cold and dampness worsen my symptoms for sure. I feel like a zombie. And also, it's when I'm being told I have a bad breath the most, no question to that. When I stay outside for too long in winter, I begin to stutter, I can't speak right. It feels like my nervous system stops working. What about you?

 

[Treeman]

So what are immunoglobulin levels? You check the amount of each main antibodies?

https://www.webmd.com/a-to-z-guides/immunoglobulin-test

 

[Mad Hatter]

https://www.webmd.com/a-to-z-guides/immunoglobulin-test

OK. Sounds like the next blood exam I'll undergo. Hard part is gonna be convincing a GP to prescribe it to me.

 

[GreenEdge]

I tried everything diet and fasting wise,

I bet you haven't tried carnivore diet.

 

[hapl808]

Personally carnivore didn't work for me, but it seems to have helped some people. My only issue with it is that proponents often feel it cures EVERYTHING and if it didn't help you, then you did it wrong or didn't do it long enough. I tried it twice, the second time more restrictive, getting my beef only fresh from a butcher (in case it was histamine issues), and so forth.

Unfortunately there doesn't seem to be a one-size-fits-all approach. I've tried carnivore, strict keto, lazy or dirty keto, AIP, paleo, general low carb, Wahl's protocol, low glutamate, various low histamine, vegan, vegetarian, high fiber, low fiber, high protein, low protein, elimination diets, elemental diets, restricted amines and salicylates, water fasting, supplement fasting, and so forth. If anything, in the end it was just a bit hard on my system chasing some magic answer.

 

[Mad Hatter]

I bet you haven't tried carnivore diet.

I did. Only increased my fatigue. When I said everything I meant it.

 

[tyson oberle]

I also did the carnivore diet for a number of months and I didn't feel any better. I alternated between grass fed beef, grass fed bison, grass fed lamb, bone marrow, small amounts of different organ meats and sometimes salmon or another fatty fish.
Right now I am almost 3 weeks into the Auto Immune Protocal Diet (no nightshade vegetables, no dairy, no grains, no nuts, no seeds, no eggs, no beans, etc) and i have been eating about 50% animal origin (grass fed red meat, the whole chicken, omega 3 pork, different types of fatty fish, shrimp, bone marrow, small amounts of broth, etc) and about 50% vegetables (organic endive, butter lettuce, organic bok choy, organic canned pumpkin, avocado, jicama, chayote squash, small amounts of organic canned butternut squash) and I don't feel any better with this diet either. It seems that animal products for me cause more LPS and/or endotoxins in my system than do low sugar vegetables/fruits.
A long time ago, I was told that if I stopped eating gluten, dairy, and soy that I would feel much better. It really didn't help much. But when I went to a paleo diet my terrible episodes of feelings of low blood sugar did improve, but nothing else improved much.
I don't know what I should do except keep making adjustments to my diet a little and maybe I will find a diet that helps me significantly.

 

[tyson oberle]

I tried everything diet and fasting wise, and nothing helped.

I also tried fasting. I once did a 7 day water only fast and I think it made things worse and I don't think I ever recovered 100%.

I look like I've escaped the cemetary. I do not look healthy. My last coworkers thought I was a regular drug user. I am often pale and have dark circles under my eyes.

Same here, I also have dark circles under my eyes and people have said I look like a regular drug user even though I have never once in my life used drugs. I am very underweight as well.

I have had bad breath. Shit breath if you pardon my french. It comes and goes. After a lot of research, I believe it is due to food overstaying in my stomach.

I used to have very bad breath, but when I cleaned up my diet (only drinking water, paleo, no sugar, not eating too much, waiting 5 hours between meals) it improved.

I always had Raynaud's

I have ice cold hands and feet and terrible cold intolerance. When I did full anemia panel tests the results were always normal. And whether I am on or off thyroid medication it makes no difference at all. I think the reason I have ice cold extremities, cold intolerance, chronic fatigue, brain fog, slow digestion, etc is due to not having enough capillaries and/or microclots in my capillaries.

 

[hapl808]

Same here, I also have dark circles under my eyes and people have said I look like a regular drug user even though I have never once in my life used drugs. I am very underweight as well.

Yep, exactly the same on all of the above. Maybe that's our problem - my friends who used lots of recreational drugs are all much healthier than I am.

I have ice cold hands and feet and terrible cold intolerance. When I did full anemia panel tests the results were always normal. And whether I am on or off thyroid medication it makes no difference at all. I think the reason I have ice cold extremities, cold intolerance, chronic fatigue, brain fog, slow digestion, etc is due to not having enough capillaries and/or microclots in my capillaries.

And my extremities tend to be colder when I feel worse. Chinese doctors always told me that was a circulation issue, and I've found blood thinners like nattokinase or allicin do help with that.

 

[Mad Hatter]

I also tried fasting. I once did a 7 day water only fast and I think it made things worse and I don't think I ever recovered 100%.

I am water fasting. Currently 8 days in. I don't believe it could make me worse but if it does, it is not so bad because I actually have nothing to lose, so I'm willing to take some risks.

It is very interesting that we share the same symptoms. I always wondered if my case was unique or not (because doctors never saw what I suffer from, and also I couldn't find similar testimonies on the internet), and it seems that I am not alone.

 

[kushami]

@Mad Hatter , have you been checked for orthostatic intolerance, and has anyone considered Sjogren’s syndrome or autonomic dysfunction?

Also, have you read about how autoimmune diseases can sometimes be seronegative, i.e. no antibodies can be detected in blood tests but the disease is obviously present and can be diagnosed from other signs and symptoms?

 

[kushami]

Also, if you have a read about all the systems that the autonomic nervous system controls, your symptoms potentially fit.

Here’s a diagram:
http://www.dysautonomiainternational.org/page.php?ID=122

Most doctors do not know much about autonomic problems, and these problems will not show up on standard blood tests or scans. You need to find an autonomic specialist if you wish to look in this direction.

http://www.dysautonomiainternational.org/page.php?ID=14

I found some information in French. It is written for people with Ehlers-Danlos syndrome, who are prone to certain autonomic problems, but the general info can apply to anyone:
https://sedinfrance.org/la-dysautonomie-dans-les-sed/