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What other diseases etc do you have to rule out to get a Chronic Fatigue Syndrome diagnosis

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Chronic Fatigue Syndrome
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Posted 6/2/2011 5:33 PM (GMT -8)
Not that I want one, because it seems like insurance flips out if you get one. But I would love to know what other problems/conditions/diseases I should be ruling out before coming to a CFS diagnosis. I know I've had tests for Lupus, neg ANA, neg c-reactive protein, full thyroid work up, including an ultrasound. Thyroid had tiny nodules and was slightly enlarged but otherwise all tests were normal. Cortisol, normal. Celiac Negative, blood tests revealed no food allergies.

My Vitamin D is chronically low (15) I was diagnosed with EBV (Mono, actually) a year ago, and tested positive for Parvovirus too. I have swollen painful lymph nodes in the back of my head, neck and jaw. I do get low grade fevers from time to time and I am unable to get deep refreshing sleep as I wake feeling exhausted whether I have had 12 or 2 hours of sleep. I was diagnosed with fibro and feel wiped out physically after minimal exercise. I'm a healthy weight 134lbs ( 5'7") Joint pain, fogginess and just insane fatigue. I just want to know personally if this really is Chronic Fatigue and if there are other problems I should be getting tests to rule out.

I currently have seen a rheumatologist and and endocrinologist...is it worth seeing a a sleep specialist, immunologist, neurologist??? I want some answers but I also wonder when I should give up :( or wait a while.
Posted 6/2/2011 9:13 PM (GMT -8)
hi, just wanted to fill you in about an autoimmune disease that i have that is called polymyosits. One of the many side effects from this rare disorder is chronic fatigue. ask your doctor to run a cpk level of your  muscles. this will enable him to see if they are spiked up and it may be the beginning of the disease. weight loss (sudden), not able to go up stairs, can't lift your arms over your head, can't get up from a sitting position.these are all side effects, hopefully you don't have it. it's a gnarly thing to have. at my worst my cpk's were 11,000 normal is 70-100. am now down to 94.... it took almost 2 years. i've come along way but it was an uphill climb that has changed my whole life.good luck to you.hope i gave you some usefull information. sue cool
Posted 6/17/2011 7:39 AM (GMT -8)
Hi mazel tov your post caught my eye. Fibro dx since 05, but went to neuro/sleep guy who told me it might not be fibro and is testing cpk, aldolase and creatine levels I go wed. to hear results. The arms overhead or getting up. I can't braid my hair anymore or put plates up on high shelf, well I can but it hurts and exhausts me. Does that sound similar? Are sleep disorders common with polymyositis? What meds did they put you on? I'm glad you are doing better.

Maggie
Posted 7/2/2011 10:42 PM (GMT -8)
 

 Hi Redheadbk,

EBV can often be associated with Lyme disease. I suggest seeing a Lyme Literate MD and getting tested through IgeneX lab so you know whether or not to rule Lyme out. Make sure the doc tests for co-infections, including mycoplasma, as it can be overlooked.  Routine tests for Lyme through Labcorp, etc. do not yield as much information.  Tests for Lyme are antibody tests, and are unreliable 60% of the time.  However, the IgeneX test shows more information, and a Lyme Literate MD is trained in its interpretation. 

In my opinion, CFS is a result of mitochondrial dysfunction.  A doctor would have to code treatment for CFS under mitochondrial dysfunction in order to get insurance to cover it. 

Any neurotoxin mediated illness can cause CFS symptoms, as the symptom set is common to a number of different diseases.  (The same is true for the fibromyalgia symptom set).  Lyme, Mold toxins, heavy metal toxicity, Ciguatera (Florida), and Pfiesteria (parts of Maryland and Delaware) all cause CFS symptoms (I'm sure there are more I'm missing).  Electromagnetic radiation from cell towers, cell phones, antennas, wifi, smart meters, etc. can contribute to fatigue.

Best wishes, and feel free to post on the Lyme forum, too!

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