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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFS Questions

I am curious how some readers determined they had CFS? Did they start feeling ill and then get viral anitbody tests? That is what I have done but, I am still not sure as it seems to be controversal. I am curious if my levels seem high to anybody reading. HHV6- was 1:80 and EBV was- VGA IgG 1:640, VGA Igm 1:10 and EB Virus Early 1:40. Do these seem abnormal? After reading some things my levels don't seem as extreme as many others. but then again i've only been feeling ill for about 3 months. I have also had low vit d and magnesium in my bloodwork and low but normal level killer cells.

I have been feeling extremely exhausted with light brain fog that just doesn't clear but, is better at times. One of the most noticeable things I have experienced is awareness of my heartrate. It doesn't seem to be too high or low but, just really hard, I feel it in my back of neck/head when do some light exercise. And I notice it alot when I am sitting or laying down. I don't seem to have alot of the other symptoms of CFS like muscle pains, or troubles sleeping. But, i have randomly just felt like my mind is going to shutdown on me and I cna't do anything about it at those times it is even hard to sleep.

Anyways, I was wondering if anyone has any information. It seems like everything I read out their make me more confused.

Thanks for your time, Sevenpelicans.


A shadow of my former self
I have been feeling extremely exhausted with light brain fog that just doesn't clear but, is better at times. One of the most noticeable things I have experienced is awareness of my heartrate. It doesn't seem to be too high or low but, just really hard. And I notice it alot when I am sitting or laying down. It is hard to sleep.

First of all, welcome.

I, and I think many others of us, could have written your above quoted words. Personally, I think the only way to be sure is finding (no small task) a competent CFS specialist to treat you as this disgnosis has unfortunately been turned into one of eliminating all other possible ones and, in addition, most doctors are ignorant of the CFS literature.

Not encouraging words from me, I'm afraid. I wasn't diagnosed until I'd been sick 24 years, but my deplorable history doesn't necessarily reflect the current state of affairs.


Senior Member
Welcome to the forum.

It sounds like your doc is on the ball, which is a rare thing.

My story is pretty typical: I went to a dozen doctors and had all kinds of tests ruling out other illnesses. I finally found a doc who was familiar enough with CFS to diagnose it. The only virus I was ever tested for was EBV. I never had all those other tests you've had.

I would suggest not doing light exercise or at least being very careful not to get your heartrate elevated.

Co Q 10 helps my brain fog significantly. You should know within a few days of starting if it's going to work for you. I'm taking 100mg, could maybe increase to 150mg.


Senior Member
hi in regards to EBV tests it not really the numbers that matter its weather its saying postive or negative to IgG Igm etc heres some links that might help http://www.labtestsonline.org/understanding/analytes/ebv/test.html http://www.hpa-standardmethods.org.uk/documents/vsop/pdf/vsop6.2.pdf If you,ve had EBV in the past you can continue to get positive resualts for the rest of your life. it dosn,t mean you have EBV it means you,ve had it in the past, sililar situation with HHV6. if you do have it useful alternatives treatments are olive leaf extract and extra virgin coconut oil you can also get monolaurin and lauricid which are more concentrated forms, it contains lauricic acid which desoles the lipid envolpes of these viruses. i,d be alot more concerned about your low vit D and magnesium, the medical name is hypomagnesemia heres a link http://emedicine.medscape.com/article/767546-overview it can be serious and should be properly investigated! low vitamin D can cause fatigue, muscle aches an d pains etc this should be treated heres a link on what should be being done http://www.ncbi.nlm.nih.gov/pubmed/19835345 also the ranges used in this article are now being seriously questioned read this site its great www.vitamindcouncil.org you also can't absorb vit d without magnesium. if what you say about your tests is right it looks more like you have hypomagnesemia, vitamin d deficiency and possibly EBV HHV6? please get vit d and magnesium properly!! investigated and treated, you might find it solves your problems. in regards to CFS the diagnosis is made after fatigue lasting more then six mounths, you have failed lab tests that would possibly explain all your problems so i wouldn't worry about that yet hope this helps best of luck
Philadelphia, PA
I got sick about 11 years ago. The illness came on gradually... I was falling asleep in class, having night sweats, losing loads of weight, and just generally feeling 'unwell.' I went to my University doctor and she discovered two swollen lymph nodes in my armpits. The swollen lymphs made all my doctors think I had Lymphoma. I was seen by several physicians - infectious disease, oncologists, etc... and they did loads of tests, all which came back "normal." After everything was ruled out - including Lymphoma - I was diagnosed with ME/CFS.

That being said, I was diagnosed by several physicians with ME/CFS at that time. I realize I am lucky, though, because my diagnosis took less than a year. At that time, I recall that most patients had to see 16 doctors before getting a diagnosis of ME/CFS. I believe the "swollen lymph nodes" demanded a response.

After this, I went to an ME/CFS specialist. At this point, in 2000, he tested me for various viruses. I had re-activated titers of EBV and HHV6A (over 1200%) which confirmed for him the other doctors diagnosis of ME/CFS. I recently saw that same doctor, and I continued to have high re-activated titers of EBV and HHV6A, as well as new titers for M. Pneumonia and Candida. Again, it further confirmed for him the diagnosis of ME/CFS.

BTW, I never had muscle pains...and I didn't have trouble sleeping until much later in my disease. I do remember having random stomache pains and cramps.

I think the disease is very person-specific...for reasons we don't know yet. I hope you feel better, though, soon. Sending you my prayers... and I hope this helps.