18 replies to this topic

[bernard]

Hello,

Well the title says it all. I've been battling with severe chronic fatigue syndrome for the last 5 years and at this point I have so little energy that it's making me severely depressed.
I need 10 hours of sleep for every 3-4 hours of work that I do. I have been to all kinds of doctors and I have ruled out everything. It's not the thyroid, it's not diabetes, it's not cortisol related and it's not neurological. I have a chronic GI infection that could be causing this, but I can't cure it - I tried all protocols and blew thousands of dollars on supplements. Some of the supplements not only made me more tired but messed with my sleep as well so at this point I had to stop the treatment because I was going to break down. I don't know what to do, I need to get out of this severe CFS otherwise I can't do anything in life. What can you suggest?

 

Thanks.

[gamesguru]

try not to oversleep at night.  exercise more often, do your own cooking with immune boosting foods (broccoli, garlic, button shrooms, grapefruit, wild blueberry, etc), indulge in some higher end yogurt and enzyme rich food once a week, and perhaps consider specific supplements such as siberian ginseng or yohimbe, b vitamins, magnesium and zinc

[bernard]

try not to oversleep at night.  exercise more often, do your own cooking with immune boosting foods (broccoli, garlic, button shrooms, grapefruit, wild blueberry, etc), indulge in some higher end yogurt and enzyme rich food once a week, and perhaps consider specific supplements such as siberian ginseng or yohimbe, b vitamins, magnesium and zinc

 

I'm already doing all the fancy stuff. I read all books on SIBO, IBS etc. I'm making my own fermented foods, following the Specific Carb Diet + AIP Diet + FODMAP Diet.

[Mind_Paralysis]

This is the wrong kind of forum for this particular question - it's far more suitable for Phoenix Rising.

 

http://phoenixrising.me/

 

It's the premiere website regarding this particular issue, and there's a plethora of knowledgable people and patients in the same situation as you, to draw upon and converse with, at that site.

 

If anyone can give you some LEGIT advice, it's the folks at the PR forums.

[bernard]

This is the wrong kind of forum for this particular question - it's far more suitable for Phoenix Rising.

 

http://phoenixrising.me/

 

It's the premiere website regarding this particular issue, and there's a plethora of knowledgable people and patients in the same situation as you, to draw upon and converse with, at that site.

 

If anyone can give you some LEGIT advice, it's the folks at the PR forums.

 

Thanks you very much,

I will check them out.

[jack black]

I'm already doing all the fancy stuff. I read all books on SIBO, IBS etc. I'm making my own fermented foods, following the Specific Carb Diet + AIP Diet + FODMAP Diet.

Have you done elimination diet, or no carbs diet, or at least no gluten/no lactose diet?

NAG is also beneficial for these GI problems.

Edited by jack black, 25 June 2017 - 03:08 PM.

[bernard]

 

I'm already doing all the fancy stuff. I read all books on SIBO, IBS etc. I'm making my own fermented foods, following the Specific Carb Diet + AIP Diet + FODMAP Diet.

Have you done elimination diet, or no carbs diet, or at least no gluten/no lactose diet?

NAG is also beneficial for these GI problems.

 

 

 

Yes, the FODMAP and AIP diet are both no-gluten, no-lactose and no-many other things. I have done elimination diets as well. Minor difference at best.

Yes but NAG is mostly about healing, not about killing pathogens. There is a book called the Gut Health Protocol by John Herron. Very advanced - includes diets, supplements, protocols. I've done it all.
 

[jack black]

I'm already doing all the fancy stuff. I read all books on SIBO, IBS etc. I'm making my own fermented foods, following the Specific Carb Diet + AIP Diet + FODMAP Diet.

Have you done elimination diet, or no carbs diet, or at least no gluten/no lactose diet?

NAG is also beneficial for these GI problems.

Yes, the FODMAP and AIP diet are both no-gluten, no-lactose and no-many other things. I have done elimination diets as well. Minor difference at best.

Yes but NAG is mostly about healing, not about killing pathogens. There is a book called the Gut Health Protocol by John Herron. Very advanced - includes diets, supplements, protocols. I've done it all.

OK, I'll bait. What pathogen are you talking about? I also forgot to mention intermittent fasting, 12-24 hrs. Very beneficial, but I can only do 12-15 hrs. All of the things I mentioned were very beneficial to myself and I do have IBS like symptoms if I lapse into bad nutrition.

[metabrain]

I had the same issue for more than half my life and doctors told me nothing was wrong,well I proved them wrong so don't let them tell you aren't sick! Remember The wearer best knows where the shoe pinches.

 

Let's go back over the following

 

The basics

Amino and Vitamins - Take a good multiamino and multivitamin, some disorders respond to vitamin and aminos, take with food.

Exercise - Do you exercise, what happens when you do?

Health - How is your general health, lungs, weight, heart etc?

Habits - Do you drink or smoke much?

Sleep -

Do you wake in the morning tired?

Do naps feel like they refresh you?

How fast can you fall asleep?

Do you suddenly fall asleep like out cold or just nod in and out?

Do you make noises as you sleep or move about?

Do you sleep soundly or wake up?

Do you ever wake and can't move?

Do you get irritated a lot, impatient with people?

 

Doctor Tests

Blood Tests - Full panels

Head injury - Have you had any head injury in the past? Head injury can cause symptoms years later.

Epilepsy - Epilepsy can cause tiredness without obvious seizure 

MRIs - To rule out structural damage or abnormalities

Psychology - To rule out depression/anxiety/stress (Sounds silly but it can unconscious)

Neurology - To rule out neurological causes

Dentist - Yes the dentist, the dentist can be helpful to see if you grind your teeth at night.

Sleep Disorder - An overnight sleep study with MSLT will rule out most sleep disorders.

 

Unusual Disorders

 

Idiopathic Hypersomnia (IH)

A very rare disorder, this is what I have, you can read my post about it. 

http://www.longecity...ycythin-review/

https://en.wikipedia...hic_hypersomnia

Treatment: Clarmycythin, Flumazenil

 

Clarmycythin takes about half an hour to fully kick, so take it when you are usually tired, for me it was always! So I took it in the morning and it gave me 3 hours of wakefullness. If it manages to work for you I can show how I dosed it to get a permanent fix.

 

Lyme Disease

Can cause a persistant tiredness even after it has been treated

https://en.wikipedia...ki/Lyme_disease

Treatment for regular: Antibiotics

Treatment for persistant: lyme Low dose naltrexone, B cell suppression 

 

Food Intolerance

Intollerance is different from allergy, intollerance usually causes digestion issues and tiredness

You can run a big skin allergy panel but it isn't entirely accurate.

Treatment: Altered diet such as Ketogenic, Vegetarian or paleo diet for example

 

Auto Immune Disorder

There are many of these, a standard blood assay rules out some of them, requires immunologist 

https://en.wikipedia...oimmune_disease

Treatment: Depends on the disorder

 

 

[PeaceAndProsperity]

If ginkgo biloba works on you like it does on me then it's caused by overactivity of the 5ht2a receptor.

[Mind_Paralysis]

If ginkgo biloba works on you like it does on me then it's caused by overactivity of the 5ht2a receptor.

 

You should probably explain how Ginkgo Biloba affects you, since the OP doesn't mention anything about Ginkgo anywhere...

 

Unless you explain, it's very unlikely that he will understand.
 

[Hip]

I tried all protocols and blew thousands of dollars on supplements.

 

Which ME/CFS protocols specifically did you try?

[Dichotohmy]

This is the wrong kind of forum for this particular question - it's far more suitable for Phoenix Rising.

 

http://phoenixrising.me/

 

It's the premiere website regarding this particular issue, and there's a plethora of knowledgable people and patients in the same situation as you, to draw upon and converse with, at that site.

 

If anyone can give you some LEGIT advice, it's the folks at the PR forums.

 

I would kind of respectfully disagree in that PR has a bad signal:noise ratio of critical investigation to frustrated posters and echo chamber that can be tough to read through and find real answers and insights - especially when you're in the grip of CFS/ME-esque brain fog. On the other hand, PR is OK for lifestyle advise if you have CFS/ME and haven't already figured out how to adjust your lifestyle to such limitations.

 

Nobody knows what CFS/ME is, nobody knows how to empirically treat it, and by any account it is a flimsy umbrella diagnosis when nothing else fits. Being that other conditions with similar symptoms may not necessarily be so rigorously investigated or excluded in one diagnosed with CFS/ME, its worth it to keep thinking of it as a mystery condition if you are diagnosed.

Edited by Dichotohmy, 01 July 2017 - 07:30 PM.

[jack black]

well, lets clarify one thing. If OP's fatigue is caused by untreated GI infection, that doesn't classify as CFS, does it?

[Dichotohmy]

well, lets clarify one thing. If OP's fatigue is caused by untreated GI infection, that doesn't classify as CFS, does it?

 

This is kind of philosophical, because an untreated GI infection could be irrelevant to symptom load and treatment response can help confirm or deny a diagnosis. I would say that an untreated GI infection, or other condition that can produce CFS-like symptoms, but which responds to an evidence-based treatment given in the assumption there is a GI infection or other condition, and that treatment abolishes CFS-like symptoms, does not classify as CFS because you have found a much better explanation for the symptoms.

Edited by Dichotohmy, 01 July 2017 - 08:26 PM.

[jack black]

Well, my question was rhetorical, but I'm glad you agreed. From my own experience, the most disabling fatigue I had was when I got fungal sinusitis. It lasted a month before I got surgery and relief. I could berely get up in mornings after sleeping 12 hrs or more.

[Hip]

nobody knows how to empirically treat it

 

Are you not familiar with the ME/CFS treatments developed by the various ME/CFS doctors and researchers?

 

These are effective treatment for ME/CFS that can improve symptoms or put people into remission, but these treatments do not work for all patients. 

 

Nevertheless, if you are an ME/CFS patient, you would be well advised to find about about and try these treatments (ideally with the help of a good ME/CFS doctor), because your luck might be in, and they may work for you.

[fairy]

How about stopping eating for a week?

 

My IBS problems go away on 0 carb and I'am way more awake.

[pamojja]

Be very cautious when fasting with a chronic condition. I tried it for 1 week with a serious chronic condition and almost completely lost blood-glucose control. Along with exasperating many nutrient deficiencies: https://en.wikipedia...eeding_syndrome