Avatar universal

My Dr. never told me

I tested postive and active for Mono a little over 2 years ago.  I have not felt well since.  I did stop with the nausea and felt I had a little energy for a while, but have never felt normal.  I told my Dr. at the time that I was still fatigued and at times felt I had relasped.  She never retested,never mentioned CFS, never thought my current symptoms could be related.

This spring I had to change Dr. because of insurance.  I had episodes of waking up and feeling great-really better than I had in 2 years-then I would, what I call, crash.  Within a couple hours I would be extemely nausea, dizzy, and simply could not sit up.  I would go to bed and sleep for hours.  I would feel worse for about three days.  This happened 5 times.  The Dr. finally tested TSH and it was high (6.7).  I started on Synthroid, but fatigue, weakness in muscles, pain in legs, in still there.  

This Dr. is referring to Rhematologist.  Could this be chronic EBV?  I am so angry right now.  I could have have a diagnosis 2 years ago.  I have also read that some Dr.s do not even believe in CFS or a connection to thyroid problems.  I am so afraid that I will always be this way.  I just happened to see a post about this forum on the thyroid forum.  I never knew.

I am a full time student and should graduate in spring of 09 with my B.S. in Human Services.  I have worked in the field before and I love it.  Today my husband and I were talking about insurance and I made the comment that I should have good insurance when I start work.  He said, " If you don't get some help and start to feel better, you will not be able to work,"  I just shrugged it off and said that I would work.  After some thought, I realized he is right.

Why was this never mentioned??  Tell me-does this sound like CFS? Chronic EBV?  What do you think the rhematologist will say if I mention it.  I, of course, will tell him about the bout with Mono at age 39 and rest of my weird symptoms.  Is this generally accepted as a diagnosis?

Sorry this is long and somewhat disjointed.  I also have trouble with brain fog at times. LOL
6 Responses
Avatar universal
Hi Cindy,

Chronic EBV is also known as Chronic Fatigue Syndrome. According to the CDC, if your EBV symptoms haven't gone away in 6 months, your physician should rule out CFS.

I am the Co-CL in the fibro / CFS forum. I hope that you will consider joining there. I did post a link on the Health Pages in that forum (to the right of the screen), that lists many of the tests that CFS patients are often failing.

There is thyroid connection to CFS. This is what Dr. Holtorf has to say about this:

"The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."

Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/library/showarticle.cfm/id/4320

And... CFS patients have a MUCH greater risk at getting thyroid cancer:

Thyroid Malignancy Association with Cortical & Subcortical Brain SPECT
Changes In Patients Presenting with a Myalgic Encephalomyelitis / Chronic
Fatigue Syndrome

Hyde MD, Byron; Leveille MD Jean, Vaudrey, Sheila.Green, Tracy.

Alasbimn Journal 10 (38):october 2007.

Article N° AJ38-2. http://www.alasbimnjournal.cl/
183933 tn?1290216962
Just wanted to let you know that you are not alone. I first got mono, EBV, when I was around 23. I got it again at 26, and again last year at 29. For some reason my EBV keeps on getting reactivated. This last time I got it I was exhausted for about 9-10 months. I thought it would never go away. I have been diagnosed with having chronic fatigue. I also have a thyroid issue. I am on levothyroxine, and that seems to be working great for my thryoid problem. I hope you get this figured out. I know how terrible it is.
Avatar universal

Hi carisa,

I was wondering if any of these symptoms sound familiar to you ? Here's the list:

cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
unrefreshing sleep
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
sore throat
Other Common Symptoms

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
brain fog
chest pain
shortness of breath
chronic cough
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
jaw pain
weight loss or gain

Avatar universal
Thank you both for the info.  I printed off the tests Plateletgal to take to the Rhematoligist.  I hope he feels differently than my regular Dr. who, when I expressed that there was something still wrong, even though my thyroid numbers were normal, suggested counseling.

I am having a very bad week.  My college fall semester started Mon.  I walked up 3 short fights of stairs and I thought I would die.  I could not catch my breath and I have been exhausted ever since.  I am just praying I can finish this degree.

I am so afraid I will never feel any better.  I was almost to the point of not even trying to go another Dr. or getting any tests, when I saw this forum.

Thank you for giving me a little hope for diagnosis.
Avatar universal

There is hope... both for a diagnosis and a possible cure. There is a promising treatment that is apparently curing CFS patients, but it comes with risks. There are also other treatments that are apparently curing CFS patients, but they take time & hard work (they make you feel worse because they are killing the pathogens that are making you ill... same thing lyme disease patients go through).

I list all of these on my website. If you read my entire profile, you'll find my website address listed. I also post links to finding a physician who knows about CFS in your area (if you need it).

Keep us posted !!!!

1080051 tn?1256056530
Hello, I am just curious to hear about what the treatmenst are for CFS. I myself have suffered with ir for almost 2 years now. I take alot of vitamins, but would be interested in other treatments....
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