just wondering....

[davidfibdou]

I have cfs for 3 years now and been getting worse unfortunately... I've suffered a lot with fitting into the cfs definition of all the symptoms listed on the CDC but I know everyone is different. I knock on wood only have devastating fatigue and short term memory issues. I now am starting to get real crashes where I feel paralyzed for days...can't even support my body weight. I was curious if anyone could comment about if they are like me or know anyone similar to me... I obviously am thankful i don't have fevers, flu like symptoms, and pain but it also leaves me feeling even more ostracized.

 

[drob31]

Have you had any lab work done? Have you had a genetics test done? What supplements / medications are you taking? (just to get things rolling)

 

[davidfibdou]

hi yeah I've done all the testing one could possibly get... the things that were abnormal were low natural killer cell count, extremely high cortisol in the mornings, and chronic low body temperature

 

[drob31]

I'll let someone who is more knowledgeable about NK cells address that, although I know CFS can manifest with a low NK count, and so can cancer and AIDS.

I'm guessing something is stressing the adrenal glands (toxicity, deficiency, toxins, heavy metals, infection(virus/bacteria), etc), and excess cortisol from the adrenals would lower t3 because of higher t3 to rt3 conversion, leading to hypothyroid symptoms, one of the bigger ones being fatigue, and low body temperature.

 

[drob31]

hi yeah I've done all the testing one could possibly get... the things that were abnormal were low natural killer cell count, extremely high cortisol in the mornings, and chronic low body temperature

What is your average body temperature, and what were your cortisol levels? Have you ever had the 4 point saliva test done?

 

[davidfibdou]

yeah that's what I think as well but could never pin point it well enough .. basically my cortisol everyday goes through the roof to about 40 mg or what we the metric is from 6 am to 10 am and then 25 mg until 1pm then drops.. to normal rest of day but by that time I'm extremely fatigued so I have this daily pattern could say that follows the cortisol rush . avg body temp is 96-97 and yes I did the 4 saliva tests that's, I don't know how to link it but I posted it here some time ago. thanks for your help!

 

[drob31]

Have you ever tried lowering your cortisol levels with supplements / herbs? I know that's probably only treating the symptom, but maybe it could offer some sort of relief.

 

[davidfibdou]

yeah I tried some cortisol blunting herbs but not for very long , I think it takes months for anything to work .. I tried adrenacalm ... I did try thyroid medication Armour but it did change much but also only used it for a month or so... think I should try it again ?

 

[drob31]

The supplements that jump out at me for lowering cortisol are: seriphos, phosphatidylserine, and dhea. Particularly Seriphos is designed to lower cortisol (google it).

Also, taken from an article about lowering cortisol:

a. Phosphatidylserene — 2g a day in divided doses
b. Adaptogenic herbs — panax ginseng, rhodiola, ashwaganda, eleutherococcus
c. Cytokine support — resveratrol, pycnogenol, green tea extract, pine bark extract
d. Neurotransmitter GABA support — taurine, valerian root, passion flower, L-theanine

http://www.t-nation.com/free_online...nce_nutrition/the_truth_about_adrenal_fatigue


Armour won't work if your body is throttling your thyroid down because of high or low cortisol. So I think the cortisol would need to be sorted out before adding thyroid hormone (if needed at that point).

 

[Martial]

I'll let someone who is more knowledgeable about NK cells address that, although I know CFS can manifest with a low NK count, and so can cancer and AIDS.

I'm guessing something is stressing the adrenal glands (toxicity, deficiency, toxins, heavy metals, infection(virus/bacteria), etc), and excess cortisol from the adrenals would lower t3 because of higher t3 to rt3 conversion, leading to hypothyroid symptoms, one of the bigger ones being fatigue, and low body temperature.

As can chronic infections like parasites, viruses, lyme and co infections.

I had a low cd57 count before my own treatment. At OP get some viral panel dones, and then also look into testing for lyme and co infections through IgeneX labs, It sounds like a recent phenomena so it would be less likely to be something like EDS, or other connective tissue disorders. This is because you were not sick until 3 years ago unless you had some seriously nagging symptoms for a long time prior.

I wouldn't mess around with thyroid meds too much. Most chronic infections actually cause a defense mechanism of sub clinical hypo thyroid to conserve energy and fight infection in the body, boosting it might help temporarily but be contradicted in the long term because you will crash harder. How are your testosterone levels?

 

[ukxmrv]

Has anything happened that is different before these crashes - just wondering if you are trying to exercise, or changed your diet or moved home or is it very hot or cold weather?

 

[davidfibdou]

@drob31 - I was on seriphos and the other adaptogens for a tiny bit of time but since i dont think they are the root cause i stopped. i used to think i was so stressed i woke up with extremely high cortisol but that cant be at those levels and every single day like clock work.

@Martial - Agreed, i have tested for so many infections but nothing comes up or maybe the tests arent sensitive enough. my testosterone levels were always slightly lower but in the normal range.

@ukxmrv - so i never used to crash at all, then slowly but surely i began recovering slower and slower from everyday tasks (not exercise). My latest real deal crash is when i helped my friend move.

so I really do think I have at least atypical CFS....I clearly can not work or go out and be social. I stay close to my bed. what do you guys think?

 

[Martial]

@drob31 - I was on seriphos and the other adaptogens for a tiny bit of time but since i dont think they are the root cause i stopped. i used to think i was so stressed i woke up with extremely high cortisol but that cant be at those levels and every single day like clock work.

@Martial - Agreed, i have tested for so many infections but nothing comes up or maybe the tests arent sensitive enough. my testosterone levels were always slightly lower but in the normal range.

@ukxmrv - so i never used to crash at all, then slowly but surely i began recovering slower and slower from everyday tasks (not exercise). My latest real deal crash is when i helped my friend move.

so I really do think I have at least atypical CFS....I clearly can not work or go out and be social. I stay close to my bed. what do you guys think?

You want to get more specific and sensitive testing done, it is obvious you are dealing with something and its probably not a genetic life long issue so more then likely pathogenic in nature. You may have symptoms of CFS but not necessarily M.E. which can be quite different. Instead of trying to just rest as much as possible and hoping it will just go away look into possible underlying causes, rather then saying its unknown and there is no treatment yada, yada, that can be kind of a trap.. While it is true that a lot of cases are unknown or not able to pin point a good treatment due to medicine not being far advanced enough for testing, and possible therapies for treatment in a clinical basis you want to do everything you can yourself.

Methylation is a big factor to look into. Then finding out with more specific testing possible viral panels, bacterial testing like lyme and co infections, parasities, or yeast, mold toxicity, a cancer screening, HIV testing if you think that could be something to look into, Neurological testing, Auto Immune conditions, though for a large part those can actually be infectious in nature, etc... Getting an idea of what could be going on with you would be a big help to find what kind of things would help you best.

 

[davidfibdou]

Guys sorry ive been so tired I coudnt get on here....

Martial - your message made me happy and curious , what other tests can I get done? I have tried doing the methylation vitamins but I doubt I did it long enough or had the right vitamins without doing the 23andme test.

 

[davidfibdou]

also this is kind of the wall but I noticed something really weird last week. I live in miami and all my friends that come over my house always get bit by mosquitos or anything flying in the air. I never get bit by anything... I can be out in the yard all day and they never want my blood... whatsup with that!

Has anything happened that is different before these crashes - just wondering if you are trying to exercise, or changed your diet or moved home or is it very hot or cold weather?

yup I literally carried a few plants around for an hour the other day... but I never had PEM since coming down with this but now I am and its frighting!