What should I try next ?

[ashram]

Hello everyone,

I'm a 33 years old man from France (excuse my poor english skills) who's had CFS for at least four years now, gradual onset. It started as mild and evolved to moderate (I'd say severe in term of brain fog at some point). A few weeks ago I was so tired that I couldn't go shopping alone without crashing. Now I'm feeling "much" better and I'm more on the moderate side. My main symptoms are : brain fog, weird headache behind the head (might be due to poor blood flow ? I've been diagnosed with hypoperfusion in some parts of the brain), jaw pain, red glassy eyes with eye discharge that I have to wipe off several times a day, and gut problems (diarrhea), even though the last one is better these days.

Recently I've tried LDN but it made me even more tired, same for high doses of B1 (thought I was going to die at some point honestly). One thing that have seemed to help is fixing my gut issue. I've done a biome test and I'm taking triphala and other herbs (slippery elm, curcuma) as advised on the cfsremission website. I think it's because of this that I'm doing better these days but of course I can't be sure.

I'm also taking :
- paroxetine (10mg)
- vitamin complex
- Tru Niagen (started a few days ago)
- D-Ribose
- Ubiquinol
- Acetyl l-carnitine
- Alpha lipoic acid

I'm able to run a little bit without crashing too hard but I think it's not helping with my symptoms so I don't do it. The thing that's really triggering exhaustion for me is socializing and using my brain in general. I can't work anymore at all.

So my question : in regard of the symptoms I have, has anyone got any suggestion on what I should try next ? I was thinking about trying either oxymatrine (or equilibrant) OR inosine + DMEA. I've tried so many things the last few years that sometimes I get tired of trying, and also I'm thinking that there are different subsets of CFS and that I might have been trying things that are not related at all to my symptoms.
I really don't have pain in my body and I think I can still do sports, which is weird for someone with CFS I think. It does make me unusually tired and increases the headaches though. But my main symptoms are around the head : red glassy eyes, eyes discharge, jaw pain, headaches, sinuses discharge, etc.
Again, I'm not sure what I should do next and I want want to try things blindly if it's not related to my condition at all. If anyone has suggestions, that would help a lot.

Also, I hope I'm posting in the right place ! Thanks a lot for reading me.

 

[Long Haul Mono]

Firstly, I have no medical training so what I'm suggesting here is 'food for thought' that you may choose to discuss with your doctor.

I'm also taking :
- paroxetine (10mg)
- vitamin complex
- Tru Niagen (started a few days ago)
- D-Ribose
- Ubiquinol
- Acetyl l-carnitine
- Alpha lipoic acid

Have you tried N-Acetyl Cysteine?
People have had mixed results with this.

The thing that's really triggering exhaustion for me is socializing and using my brain in general. I can't work anymore at all.

I get similar symptoms. I may feel relatively OK but once I try focusing/concentrating on any task my energy level quickly 'drains'.

So my question : in regard of the symptoms I have, has anyone got any suggestion on what I should try next ?

Whatever you try, try not to make the same mistake I made, ie trying too many things at once.
Taking too many supplements at once will make it hard to determine what worked and what didn't.

I really don't have pain in my body and I think I can still do sports, which is weird for someone with CFS I think.

Not really. Each person's story is different. It's just we have similarities in symptoms.
Look into 'pacing' and if it can work for allowing you to continue to play sports, but it depends what sport you're playing, ie physically demanding sports may be too much.

It does make me unusually tired and increases the headaches though. But my main symptoms are around the head : red glassy eyes, eyes discharge, jaw pain, headaches, sinuses discharge, etc.

Can you identify anything that may have happened (that seemed out of the ordinary) prior to the onset of these symptoms? For example, sports-related injury, some sort of infection? Based on what I have heard (and experienced) CFS/ME is generally triggered by physical/psychological/environmental circumstances, and although you said it was a gradual onset, can you identify anything different in your life before this onset. This (or these) event(s) may help your doctor (and/or specialist) diagnose the cause(s).

If you haven't tried this already, you may consider having your doctor refer you to a neurologist to run a few diagnostics, as the symptoms described appear to be mainly around your head. But you can't exclude the gut problem (that you mentioned) possibly triggering these symptoms. Diagnosis and treatment of CFS/ME is generally a process of 'ruling other things out'.

Hope this helps.

 

[Crux]

I suspect an infection(s) is causing at least some of your symptoms.
Even if the mucus isn't colored, there could still be an over growth of some normal bacterial inhabitants of the respiratory system.

For instance, Non-typeable Haemophilus Influenzae, is a bacteria that inhabits human respiratory system.
It can cause conjunctivitis, sinusitis, otitis media (ear infections), and even lower respiratory infections.

H. Influenzae can become more virulent after a viral infection, or some other stressor.

https://journals.asm.org/doi/10.1128/mSphere.00384-20

"IMPORTANCE Nontypeable Haemophilus influenzae (NTHI) is the predominant bacterial causative agent of many chronic and recurrent diseases of the upper and lower respiratory tracts. NTHI-induced chronic rhinosinusitis, otitis media, and exacerbations of cystic fibrosis and chronic obstructive pulmonary disease often develop during or just after an upper respiratory tract viral infection."

I suspect I've had this. I've used a third generation cephalosporin against it, which was effective, but with side effects.

This bacteria is susceptible to Hydrogen Peroxide. I use a dilute H2O2 in a sinus spray bottle which seems to inhibit its growth.

H. Influenzae uses heme (iron), and NAD+ for growth.

 

[ashram]

Have you tried N-Acetyl Cysteine?
People have had mixed results with this.

Thanks a lot for your answer !
I've tried NAC for a month or two and couldn't notice a change so I've dropped it for now.

Can you identify anything that may have happened (that seemed out of the ordinary) prior to the onset of these symptoms? For example, sports-related injury, some sort of infection? Based on what I have heard (and experienced) CFS/ME is generally triggered by physical/psychological/environmental circumstances, and although you said it was a gradual onset, can you identify anything different in your life before this onset. This (or these) event(s) may help your doctor (and/or specialist) diagnose the cause(s).

It's hard to tell. I found I had a giardia intestinalis infection while doing stool testing because of my fatigue/gut problems at the beginning of my CFS, and I heard that it might cause CFS. I also had a jaw injury one year before (I fell hard on the floor), and I also had my wisdom teeth removed and caught a tooth infection right after that, that was controlled with antibiotics. Doctors don't see how that could cause chronic fatigue though...

If you haven't tried this already, you may consider having your doctor refer you to a neurologist to run a few diagnostics, as the symptoms described appear to be mainly around your head. But you can't exclude the gut problem (that you mentioned) possibly triggering these symptoms. Diagnosis and treatment of CFS/ME is generally a process of 'ruling other things out'.

I met a neurologist at the beginning but he couldn't see a problem with me. He probably thought I was depressed or something.

I suspect an infection(s) is causing at least some of your symptoms.
Even if the mucus isn't colored, there could still be an over growth of some normal bacterial inhabitants of the respiratory system.

For instance, Non-typeable Haemophilus Influenzae, is a bacteria that inhabits human respiratory system.
It can cause conjunctivitis, sinusitis, otitis media (ear infections), and even lower respiratory infections.

H. Influenzae can become more virulent after a viral infection, or some other stressor.

https://journals.asm.org/doi/10.1128/mSphere.00384-20

"IMPORTANCE Nontypeable Haemophilus influenzae (NTHI) is the predominant bacterial causative agent of many chronic and recurrent diseases of the upper and lower respiratory tracts. NTHI-induced chronic rhinosinusitis, otitis media, and exacerbations of cystic fibrosis and chronic obstructive pulmonary disease often develop during or just after an upper respiratory tract viral infection."

I suspect I've had this. I've used a third generation cephalosporin against it, which was effective, but with side effects.

This bacteria is susceptible to Hydrogen Peroxide. I use a dilute H2O2 in a sinus spray bottle which seems to inhibit its growth.

H. Influenzae uses heme (iron), and NAD+ for growth.

Thank you for your answer, that's very interesting. Which dose/concentration of H2O2 do you use ? I believe it would not be safe at higher concentrations, right ?

 

[Wishful]

Whatever you try, try not to make the same mistake I made, ie trying too many things at once.
Taking too many supplements at once will make it hard to determine what worked and what didn't.

It's also possible for one treatment to mask another: one might be helpful but is masked by another one being harmful.

I really don't have pain in my body and I think I can still do sports, which is weird for someone with CFS I think.

It's not weird, it's just not 'typical'. I didn't have any physical limitations from my ME, so I too could continue hiking, biking, etc. My PEM seemed to be triggered by using my muscles in ways that weren't usual for me. For example, I could shovel soil for hours without triggering PEM if I shovelled 'the usual way'. If I used a different technique, such as stabbing the shovel forwards at hip level, just a few minutes was enough to trigger PEM. If you limit your muscle activities in sports to what is typical for you, it might not cause problems.

I agree with Crux: the eye/nose discharge is suspicious and you should get tested for infection of your nasal passages and mouth, and make sure that they aren't just testing for the very common microbes. I expect there are some rare and hard-to-notice microbes (amoebas, fungi) that are missed by the usual tests.

 

[Crux]

Which dose/concentration of H2O2 do you use ? I believe it would not be safe at higher concentrations, right ?

If your tissues are inflamed, it will burn them. Too concentrated a dose is pro- oxidant, but the body makes it to fight microbes. Some microbes make it to inhibit each other. There are probiotics that make it too.

I buy the otc 3% and dilute it by 50% with distilled or RO water. It will still foam if there are pathogens in the sinuses.

When I had giardia, I was down for the count. I believe any type of infection can cause pathological fatigue.