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Old 03-24-2006, 01:51 PM   #5
Senior Member
Join Date: Jun 2005
Posts: 104
Traumatized HB User
Re: Please Help!!!! Do I Have Oral/Throat Cancer

Dear futurehope,

Just relax and stay healthy food-wise and weight-wise or you will just make your immune system even weaker....I made that mistake because the nausea was and is unbearable at times but giving in to it has just made my system weaker so rather than it just being a regular case of HHV6, EBV and CMV that sometimes passes by without notice, I have developed ones considered for immunocompromised patients.
Firstly, I visted lots of dentists because I was clueless about it possibly being connected with viral illnesses etc...and I made the connection with infant roseola that I had contracted when I was about two, with HHV6 after one year of dental agony. I was given neurological medication to improve some secondary trigeminal nerve problems due to bad dental work and it was this very medication that trigerred the HHV6. Little did I know about it all at the time so when I suddenly developed nausea, lymphedentis, muscle weakness to the point of not being able to stand up, joint pain etc... it was too late to just stop taking the meds. Normally it takes 3 months for medicine induced lymphedenitis to return to normal but it woke up the HHV6 in me which has been worsened by high EBV and moderate CMV. I underwent parotitis which the dentist and doctor blamed on my wisdom teeth but who knows. It all seems to be connected somehow. I had a high level of staph and strep when they removed my wisdom teeth and one other tooth without any antibiotic protection so I think that that has also caused a mess in my mouth and the possible osteomyelitis that my weakened immune system can't fight off.
My lymphedenitis was generalised so it was felt all over my body, groin, lungs, armpits, but especially in the head area: back of neck and salivary glands. It has focussed itself on my head area now and when the load gets high, my legs get the wobblies because my groin swells.
Patience with the blood tests. The drs will follow a process of elimination, trying to eliminate the most common and likely things first (the tests for these things are also cheaper for them). If nothing is positive, then they will add some of the more complex tests for cultivating. When someone shows up with generalised lymphedentis, it is difficult to diagnose. If it is contained in certain areas, it narrows the possiblities down. Where are you swollen? Just the salivary glands? Your ENT will take a sample of your glands if he thinks it is necessary. I had a parotid biopsy done, very painful, because of the parotitis and a submandibular gland biopsy because of the lumpy jaw and pain. I literally looked like a chipmunk and the glands were hot and painful to the touch. Because nobody knew what was wrong, I was sent running back and forth from the ENT to the dentist and then finally the autoimmunologist who eliminated Sjogrens and other autoimmune causes of gland swelling. The drs wasted a lot of time and money on me because had my GP listened to me in the summer when I mentioned the HHV6 and roseola connection and that maybe I should be tested for that, he said he didn't know what it was and refused to do. Well, 2 MRIs, 1 CT scan, 1 izotop and about 10 blood tests later it i sback to square one. I feel like crying but yet I have to laugh at some of the ridiculous drs I bumped into along the way and the horrific experiences.
The next step for me...I seem to be doing it all the infectious diseases dr or immunologist to determine to what extent all of the viruses have affected me. My body seems to be giving in to it all and not fighting at all so it is annoying me. I am drained from just walking or gardening for 5 minutes. In some way, bacterial is better because there is something the drs can do about it but viral sucks as there is very little that can be done. I also have to have the lower left jaw looked at which is a bit of a nightmare. I am worried about losing more teeth especially since certain immune problems don't allow your body to accept implants well. It is either osteo, a fractured tooth or the IAN has been affected by dodgy dental extractions.
Sorry for my rambling. The whole story is a long and complex one with many contributing factors.
Just stay strong, eat well and pamper yourself to keep stress and anxiety down. I also have anxiety problems and I am trying to keep them at bay to help strengthen my system.
Take good care,
Let us know how things go and ask about whatever you like...learning from others is often more helpful than drs who have never felt any pain and suffering.