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Old 11-26-2012, 07:01 PM   #16
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Re: Extreme fatigue for years - still no diagnosis

The adrenal screening is just a serum cortisol level ideally done at 8 AM and 4 PM, as there is a normal fluctuation of cortisol throughout the day, and 2 readings are better than one, one at the high and one aqt the low of the day. If either is low or borderline low, a cortisol stimulation test should be done by an endocrinologist. Some labs do cortisol by saliva testing. Low adrenal function is usually caused by autoimmune disease of adrenals, with antibodies in your body attacking your adrenal cells. It makes people very tired, weak, low BP low sodium, high potassium, low blood sugars, weight loss, poor appetite, and any stress overwhelms the body. Some people have dark pigmentation with it like a tan year round, or dark deposits in the creases inside the joints, like elbows, wrists. It is often not thought of or tested for. The EBV tests show if a person has had past mono (85% of Americans have had it). The virus usually go into remission after infection and stays inactive. In some people, it seems there is continuous or episodic viral activity after infection, causing fatigue and persistent mono symptoms. The EBV is then considered chronic, and certain antibodies (early antigen) persist in high titers in the blood, which show up on the chronic EBV panel.
Some Drs. are familiar with this stuff, some are not. I would learn all you can about it, look for clues in your past labs, etc. Then just tell your doc you've been wondering about these things, have never been tested for them and would like to be tested. If they refuse, it is probably because they don't know enough about it to interpret the results. An endo would do the cortisol and infectious disease docs may do the EBV if you have to see a specialist to get them done. I can't stress enough that many people diagnosed with fibromyalgia actually have other illnesses, some more treatable, but just haven't been tested for the right things. It is sometimes a catchall diagnosis that mystery illnesses fall into for lack of a better diagnosis, unfortunately.

 
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Old 11-27-2012, 03:36 AM   #17
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Re: Extreme fatigue for years - still no diagnosis

Hi Ryan,

My situation is very similar to yours. I have almost everything except itchy eyes.
I feel much, much better when I stay on low-carb and NO high GI food diet.
Have you tried this before? It costs you almost nothing to try.

Regarding your eyes, you should really check your Thyroid function as LadyBud suggested. I got better when started with dissicated thyroid supplements.

Ciao Mario

 
Old 11-27-2012, 07:37 AM   #18
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Re: Extreme fatigue for years - still no diagnosis

Hi, I've a low thryoid and in my 50s started getting panic attacks - this seems to be a "theme" with FM I notice as others post, hmm, as for the itchy eyes, possible food allergy as mentioned above, but I do have itchy skin, occasionally. I've been the allergist (as many here have too) and poked w needles and told a few environmental allergies I may have, no food allergies were found. Best wishes on finding out about your eyes. What do the drs say about your eyes?

 
Old 11-27-2012, 07:55 AM   #19
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Re: Extreme fatigue for years - still no diagnosis

Itchy eyes can be greatly helped with Decadron eye drops, if it is allergy caused. It is Rx but any doc can write a RX for that. It comes in generic too. Relieves the itch almost immediately.

 
Old 11-30-2012, 10:36 PM   #20
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Re: Extreme fatigue for years - still no diagnosis

Quote:
Originally Posted by MarioC View Post
Hi Ryan,

My situation is very similar to yours. I have almost everything except itchy eyes.
I feel much, much better when I stay on low-carb and NO high GI food diet.
Have you tried this before? It costs you almost nothing to try.

Regarding your eyes, you should really check your Thyroid function as LadyBud suggested. I got better when started with dissicated thyroid supplements.

Ciao Mario
MarioC, my wife says this sounds like the next thing we can test out at home (the low-carb and no high GI food diet). About how much time elapsed before you started feeling different?

Ladybud, my girlfriend in high school had mono and I joke that I feel like she looked back then, but I didn't get symptoms for years after that so I've dismissed it. Could the mono virus actually persist this long? From what I read a while back mono should go away after a few years at the most.

Anna2012, I haven't had an EEG done but the sleep latency test gave them a whole day with probes on my head able to monitor my brain activity so I'm assuming that they would have seen something out of the ordinary that day. Maybe it's worth mentioning that to the doctor as well.

Chicabellarox, I read a little about Sjogren's Syndrome and I don't think that's what I have. I don't seem to have most of the symptoms of that syndrome.

My eyes checked out fine at the eye doctor a few years back so I'm assuming the itchy heavy eyes are just something that go along with the rest of the fatigue.

Thanks again all!
Ryan

 
Old 12-09-2012, 04:33 PM   #21
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Re: Extreme fatigue for years - still no diagnosis

I am so sorry you have been dealing with this for so long! I am just now trying to figure out a solution to this bundle of frustrating unknowns called Chronic Fatigue. I have discovered that taking an adrenal supplement religiously does make at least a small but noticeable difference. Please continue posting if you figure anything out! Leslie

Last edited by Administrator; 12-10-2012 at 03:02 AM.

 
Old 12-10-2012, 05:11 PM   #22
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Re: Extreme fatigue for years - still no diagnosis

Thank you so much for the tip on the adrenal supplement, is this available at a health food store, any particular brand you favor?

 
Old 12-16-2012, 09:53 PM   #23
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Re: Extreme fatigue for years - still no diagnosis

Thanks for the tip about the adrenal supplement - I'll have to try that soon.

For now I'm taking a short break from all the MDs and have read a few books about the digestive system. I am currently trying out a 'functional medicine elimination diet'. It's basically wheat, gluten, dairy, alcohol, caffeine and sugar (except for fruit sugars, etc) free. Surprisingly I've made some pretty good dishes within the limits of the diet. I'm taking a chance that I just have too much toxicity built up in my body from poor diet (though I didn't feel my diet was that bad in the first place) or possibly from food sensitivities. I'll advise if it makes a difference. After that I'll definitely pursue the adrenal supplement as well as all the other great advise you guys have given me.

Cheers,
Ryan

 
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Old 12-17-2012, 07:35 AM   #24
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Re: Extreme fatigue for years - still no diagnosis

Hi kingsb, I know it's expensive and insurance does not cover this, but I have found some very good relief with deep tissue massage. The nervous system, at least mine, is uplifted afterwards, I feel better less fatigue and pain for several days; and am noticing since I am being more "regular" with getting body work - I go once a week, I am improving overall; less fatigue, more energy and less body aches. I think my nervous system is responding well to the therapy. Best wishes in your recovery from fatigue.

 
Old 01-30-2013, 06:38 PM   #25
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Re: Extreme fatigue for years - still no diagnosis

kingsb - my story is almost identical to yours. Have you found any answers yet? I'm still feeling terrible every day, with some variance from day to day, but all days are bad relative to the way I felt 4 or 5 years ago.

 
Old 01-30-2013, 06:59 PM   #26
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Re: Extreme fatigue for years - still no diagnosis

eattrig -

No luck yet. There are so many possibilities out there that it's easy to get overwhelmed. I'm just going to try tackling things one at a time.

I've read a lot about Candida Albicans lately and the symptoms of acetaldehyde (which the yeast gives off) are very similar to what I experience every day (it worsens with certain meals):

∑ Impaired memory
∑ Decreased ability to concentrate ("brain fog")
∑ Depression
∑ Slowed reflexes
∑ Lethargy and apathy
∑ Heightened irritability
∑ Decreased mental energy
∑ Increased anxiety and panic reactions
∑ Decreased sensory acuity
∑ Increased tendency to alcohol, sugar, and cigarette addiction
∑ Decreased sex drive
∑ Increased PMS and breast swelling/tenderness in women

The brain fog is the one that really drives me crazy. I can feel it in my head, my eyes get itchy and all I feel like doing is resting my head on something (usually it ends up being the dinner table in front of my wife - lol).

And the sugar tendency - I used to take a $10 bag of wine gums and not be able to stop until the bag was done. I did this all the time. This may sound like typical gluttony, but I only do this with sugary products and beer (I used to do it with cigarettes) and have always been pretty much underweight and physically fit otherwise.

I've just read "The Candida Cure" by Ann Boroch and am starting my 3-month journey with a very limited diet and a bunch of yeast-killing supplements. My problem may not be Candida, but it's worth a try. They say that up to 70% of us could have at least a minor overgrowth of yeast in our gut anyway, so it's still healthy to clear the overgrowth and avoid eventual autoimmune disorders in the future.

Eattrig, maybe take a deeper look at Candida (ignore the stuff about vaginal yeast infections - this affects both men and women and starts in the gut)? I'm just as lost as you are right now, but I feel better when I'm trying anything to get rid of this ball and chain.

Ryan

 
Old 01-31-2013, 08:30 AM   #27
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Re: Extreme fatigue for years - still no diagnosis

One idea for you both if you haven't tried this yet- see a good functional medicine Dr. They focus on things like food intolerances, vitamin deficiencies, yeast overgrowth, etc., the things many traditional Drs tend to poo-poo. They use labs that measure candida antibody levels, and all sorts of antibodies to foods, etc. They tend to use supplements to correct imbalances, but at least they do it in a scientific way, based on lab evidence of abnormalities. I believe they have a chronic fatigue panel that tests for all sorts of things that can cause fatigue. There is a very good one in Ft. Collins CO. Worth a try to get some answers.

 
Old 02-16-2013, 04:16 PM   #28
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Re: Extreme fatigue for years - still no diagnosis

I didn't read the entire thread, so don't know if this has been suggested, but you may have parasites. Don't believe doctors who tell you they don't exist. I had IBS, CFS, and Fibro for many years before I finally was properly diagnosed. By then, so much damage was done that I could not be entirely cured, but I'm much better and live a near normal life now.

What makes me think you may have parasites is the itchy eyes, because that's what my first sign was that something was wrong. I could actually feel things crawling in my eyes and they watered all the time. I was reading that most people who are diagnosed with certain parasites first come in because of eye problems.

If you have or work around animals, eat rare meat or raw fish, or walk barefoot on the beach or in your yard, you can pick up parasites. You can even pick them up from not washing your hands before eating after petting your cat or dog, or not properly washing food that comes from a tropical country. I got mine (they think) from gardening barefoot and without gloves in land that used to house farm animals and poultry.

The sad part is that the stool test, the main means of diagnosis in the U.S., is useless and in error 70% of the time. There is a blood test called ELISA if you can talk your doctor into giving it to you that detects antibodies in your blood that are caused by the parasites. Sometimes they can even find the parasites themselves in your blood.

The one I have, strongyloides stercoralis, is endemic to the subtropical US (almost the entire south) and 4% of people in West Virginia have it, but doctors will still tell you it can't be gotten here. They fail to take into consideration all the imported foods and people and immigrants coming into this country every day carrying God knows what.

There is a good herbal parasite cleanse called Humaworm. I don't work for them, and don't make any money from recommending them. I used it and it didn't cure my parasite, because it can't be cured, but it let me know what I had. I had other things besides. When all was said and done, I had 5 different parasites in my body, including two different tapeworms, hookworms, strongyloides, pinworms, and systemic candida. I did not get better overnight, but the first round of Humaworm helped tremendously. Cured my IBS completely, and it was so bad I was doubled over in pain in the bathroom every night. I took two rounds before most of the symptoms started to go away. On the second round, the strongyloides started coming out of my skin. I went to the doctor and showed him, and that's when he ordered the ELISA test.

I know this isn't a popular topic, but parasites are becoming epidemic in this country, and doctors here aren't equipped to diagnose or treat them. If you can find a doctor who immigrated here from India or a tropical country, go to them. They are much more likely to believe you.

 
Old 02-16-2013, 04:39 PM   #29
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Re: Extreme fatigue for years - still no diagnosis

Thanks for the replies. I believe functional medicine is another way of describing Naturopathy. If that's the case then I've already seen two Naturopaths and wasn't able to get a solid diagnosis. I did recently find what seems to be an excellent one in my area, though, and after this three month candida protocol I'm going to go see him. I'll definitely mention the possibility of parasites to him - hopefully he can offer more insight that the standard blood tests I've had done in the past.

Cheers,
Ryan

Last edited by moderator2; 02-16-2013 at 05:14 PM.

 
Old 02-16-2013, 04:44 PM   #30
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Re: Extreme fatigue for years - still no diagnosis

Quote:
Originally Posted by kingsb View Post
Thanks for the replies. I believe functional medicine is another way of describing Naturopathy. If that's the case then I've already seen two Naturopaths and wasn't able to get a solid diagnosis. I did recently use ratemds.com to find what seems to be an excellent one in my area, though, and after this three month candida protocol I'm going to go see him. I'll definitely mention the possibility of parasites to him - hopefully he can offer more insight that the standard blood tests I've had done in the past.

Cheers,
Ryan
Naturopaths are much more likely to believe you have parasites than conventional doctors. Let us know what happens. Please consider doing the parasites cleanse anyway, though. Everyone has some sort of parasites, and it may help you.

 
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