EBV & throat cancer? PLEASE ADVISE!

[hope114]

I went to the doctor and my EBV levels were high indicating mono. I have been experiencing extreme fatigue causing me to sleep from 10-12 hours a day. I also have tension in my head/eyes, difficulty concentrating, anxiety, mild depression (intensified by feeling tired and the inability to complete common tasks).  I feel like I am just beginning to have a sore throat. I have not seen these numbers yet to know how high they were. I feel like I have had fatigue for years, since I was 17 or so. Now with mono it is much worse. My concern is that last summer I developed what the dr.'s said was a bacterial infection in my throat. I felt like someone was cutting the back of my throat so badly that I could not even swallow my own saliva and also had a fever that ranged from 101-104 for four days straight. I saw three dr's that dismissed me with the bacterial infection until on the fourth day I coughed up a quarter sized piece of tissue from my throat! After that the pain quickly subsided. I took this to my doctor to show her but she never had it cultured. She said that it must have been an infection in my adenoid. Today when I swallow I feel my remaining adenoid or tissue pulling down like what happened when the other one removed itself. I know this must sound strange, I wouldn't believe it if I hadn't experianced it. I am fearful that this could be linked to Nasopharyngeal cancer.  Please advise!!!

[PlateletGal]

Since you have chronic myofascial pain and pain seems to be your main complaint... it does sound like you have fibromyalgia. All of these "autoimmune diseases" and "syndromes" have so much in common and share overlapping symptoms. Although special interest groups are trying so hard to say that these conditions don't exist and/or are caused by "stress" ---- the evidence for CFS, at least, has been proving otherwise. I'm still not sure as to why the CDC hasn't been investigating the role pathogens play in fibromyalgia patients. (politics as usual?)  I'm not sure if you heard about the scandals involving the CDC and Chronic Fatigue Syndrome, but it was outrageous. The government seems to be doing the same thing they did to our Gulf War soldiers. It is disgusting and shameful.

[hope114]

Thank you for your advice. I will definetly look into the information you provided. I'm also going to try & have the dr. test for lupus. I searched & saw a connection between lupus, low vitamin d levels & ebv. I have an aunt with lupus & want to rule it out. Thanks again.

[rwilli]

I have no idea if there is really a different condition called CFS. FMS has all of those symptoms. That is why FMS is a syndrome they can't find the cause for it.

  I have many symptoms but I also have CMP. It is finally a disease since they have found the cause. I have never been diagnosed with it but I have it for sure. It is very confusing even for the DR"s. Most have no idea. If they knew the root cause they could call it a disease and find a cure.  Oh I think they say you have CFS if you don't have any pain........yet.

  There are a few theory's about the cause. One being an injury the set off a condition that is already in your body. Possible from a viral infection.            Rwilli

[PlateletGal]

What are your symptoms ? The only reason why I ask is because I'm seeing MANY physicians who are misdiagnosing people with CFS with fibromyalgia instead. I do agree with you about fibro patients having high EBV levels...  IMO, if you want to successfully treat fibro, CFS and autoimmune conditions... you need to get to the ROOT of the problem: pathogens.

Infection as One Possible Cause of Fibromyalgia

link: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=14187&B1=EM121708F

[rwilli]

Many of us who have Fibromyalgis have had high ebv levels. I am suprised to see that they are still looking at them as I thought they had found most people had some exposer to ebv some time in thier ilives.

Get more sunlight to raise your vit D levels. Your symptoms sound like Fibro, I have had throat cancer but mine was just a rough spot in my throat.   rwilli

[PlateletGal]

Hi hope,

I'm not surprised to hear that your vitamin D is low. I agree with the latest (but controversial) research that a low vitamin D level is not the cause, but the RESULT of an illness.

You may want to consider having a DEXA scan done.

And I hope that you will check out the Health Pages that VaBreeze & I have added in the fibro/CFS community. (look under "related communities" on this board and you will find the link to the discussion forum)

Stick around... one thing I've learned with this illness is support from those who have it is vital and keeping up to date on the research is vital. There are many physicians who don't know how to treat this, but there ARE treatments available.

[hope114]

Thanks for all the help. I just recieved a call from my doctors office that indicates that I am quite low on my Vitamin D levels as well. They recommend I start taking 800 units a day. I wonder how long this had been going on for. I have experienced abnormal tiredness for years now & now with the EBV it has gotten worse. It feels good to have some answers at least.

[PlateletGal]

Hi hope,

When you see the ENT Specialist, I would talk to him about your concerns. From my experience, I've learned to print information for my physicians... just in case. I would print that info on thyroid cancer and nasopharyngeal cancer... and tell him that you would like both conditions to be ruled out.

You may have to see a HEM/ONC physician.... so consider calling your PCP and scheduling an appointment with him or her as well.

I can tell you that the first year after I had mono... I had chronic strep throat and other infections. They took out my tonsils shortly after that. It could be that your body is just fighting off numerous infections (and of course the tonsils help do that).

So good luck to you and let me know what happens if you can... okay ??

[hope114]

Thanks for your response. I normally have headaches, trouble hearing, pain & ringing in the ears & a sore throat. When I had the problem with my throat in the past I could barely speak and when I did I sounded like I was mute. It was pretty severe. Now this issue with my adenoid seems to be flaring up, maybe due to the mono. I am planning on making an appt to see an ENT. Do you recommend an ENT or another specialist? Last time the other family doctors I saw were not able to see the area of infection due to the adenoid being higher up in the throat and I had to just wait until the infected tissue (or adenoid (?) removed itself. I hope this doesn't happen on the other side but it is starting to feel the same. Thanks again.

[PlateletGal]

Thyroid malignancy in ME/CFS patients greatly exceeds the normal incidence
of thyroid malignancy in any known subgroup. So this is another concern among EBV, CFS patients.

Here is the link to the document if you would like to discuss this with your physician. I see it this way.... chances are, you are okay... but just in case.

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0805D&L=co-cure&P=R3591

[PlateletGal]

If your physician refuses to rule out nasopharyngeal cancer, please consider seeing another physician right away. It is a well known fact that this type of cancer can be associated with the Epstein Barr Virus.

Symptoms of nasopharyngeal cancer include:

a lump in the nose or the neck
trouble breathing and/or speaking
nosebleeds
headaches
a sore throat
trouble hearing
pain or ringing in the ears