Where to go from here?

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New Member

Date Joined Dec 2013
Total Posts : 3
   Posted 12/1/2013 5:15 PM (GMT -6)   
Hello everyone,
A bit of a background is in brackets - skip this section if you just want to see my question.
[I am a 38 year old male.  I have been ill for the past 9 months - not continually, but with recurrent bouts of what seems to be a viral infection that won't go away.  The physical symptoms predictably follow the same pattern, though the symptoms are of varying degrees of intensity and the cycle does not always complete :
1.  Sore throat and ears begin to ring
2.  Sinuses build up
3.  Body/muscle aches like one gets with the onset of flu and low body temperature (95-96 degrees Fahrenheit - the doctors never seem concerned as my regular body temperature is around 97.8)
4.  Sour stomach
5.  Sore throat pain intensifies with coughing (at times it feels like someone has poured acid down my esophogus)
6.  Begin to feel better (for about a week)
7.  Fluid begins to build up in left ear, hearing is diminished, onset of vertigo.  No pain in ear.
8.  When hearing begins to resume, I still have a "full head" feeling, including some tingling "numbness" (such as one would get if their funny bone was hit) and a headache that can anything from the run of the mill variety to feeling like someone is taking a swing at your skull with a hammer from the inside out - spaced apart by long intervals (thankfully, these headaches are rare).
Stages 1-5 can last anywhere from 24 hours to two weeks.  Stages 7-8 typically lasts for about a month, however, there are residual effects that never completely go away.  The two worst cases were the initial one in March and again from October into November, but with other micro-episodes that occurred from April through October.  I am sick again with this right now.  I can only describe it the feeling you get just as you are getting the flu, but with the addition of other symptoms.
Back in March, the initial urgent care doctor diagnosed me with laryngitis and pharyngitis, and sent me home with a prescription.  A week later, I was back since I wasn't getting any relief.  A second, and then third antibiotic were tried in the following weeks as the "infection" had spread to my ear.  Blood work was taken - mono, flu, strep, chem7, hba1c, and cbc - all came back negative/normal despite how sick I was.  I was referred to an ENT and audiologist.  While negative pressure was noted in the left ear, I was given nasonex and told to wait it out.  After a follow-up appointment with the ENT where I was essentially told my best option was to "live with it", I went back to my PCP and was prescribed Zyrtec, as well as an osteopathic technique which is supposed to promote sinus drainage.  I've also used an Otovent device to help open up my hearing.
I've spent the better part of the past 8 months in bed.  Yes, I do have some days I feel pretty well, but if I push myself too hard mentally or physically, the fatigue and dull body aches hits me all of a sudden like a brick.  Most days, I have to drag myself out of bed to do my jobs, only to come back home and head to bed.  Of course, when the physical symptoms above present themselves, I simply can't get out of bed.  This is my busy season - I am an organist and choir director, music teacher, as well as retail merchandiser (each of these jobs is very part time until December - ugh).  I am drained - physically, mentally, emotionally, and financially.]
I've decided enough is enough... this clearly is not going to go away on its own.  Perhaps there is something more serious.  Maybe CFS (I seem to have most of the symptoms) , maybe something else...
In looking back, the illnesses I have had in previous years seem to be drug resistant or viral in nature and chronic.  For example, about seven years ago I had tonsillitis for nine straight months.  I would go to the doctor, get a prescription, get some relief for about a week, and then it would hit me again and the cycle continued.  I had seen an ENT for a consultation about having my tonsils removed when the tonsillitis mysteriously cleared up (perhaps it was the last antibiotic; if viral, perhaps it had finally run its course).  Another example is when I had pneumonia about four years ago.  It lasted for about six weeks (and the first two antibiotics I was put on were not effective), but I had residual effects of body aches and night sweats that continued to occur for months after the doctor said I was all clear.  Additional blood tests were taken, but everything came back normal. 
As I mentioned, I piece together multiple part-time jobs to make a living.  As such, I have no employer sponsored heath care.  I'm personally responsible for the first $10,000 of my medical bills on my plan (it is the only way I could afford the premiums) - so any testing I have done will be coming out my own pocket.
I'm well aware that there is no cure for CFS, but I've got to start somewhere.  I plan to ask the doctor to run Lyme Disease, Thyroid, and Mono and start trying to eliminate other causes.  It is doubtful that a Chem7 or CBC will reveal any more than they did last time.  Are there any other tests that are relatively inexpensive that you all would suggest running?   At this point, and MRI is out of the question - I just don't have the cash.  I just don't want to jump to invalid conclusions either. 
I welcome all input and ideas.
Thank you,
Southern Harmony

Post Edited (southernharmony) : 12/2/2013 6:26:45 AM (GMT-7)

Just Call Me Nike
Regular Member

Date Joined Jun 2013
Total Posts : 22
   Posted 12/7/2013 7:10 PM (GMT -6)   
I apologize if I accidentally overlooked anything here.

Did you get an ANA titer?
Fibro; bad at seeking help.

Regular Member

Date Joined Nov 2013
Total Posts : 167
   Posted 12/18/2013 4:21 PM (GMT -6)   
Don't know if you are still around. I too have all the symptoms and the chronic illness you are going through. The only ones I don't have is 7 & 8. It became a real issue for me after I had the West Nile. I was diagnosed with fibromyalgia.

My only suggestion is to try to find a Dr. in your area that is familiar with CFS and FM.

Truly sorry for what you are going through.

New Member

Date Joined Dec 2013
Total Posts : 3
   Posted 12/18/2013 10:51 PM (GMT -6)   
Still around.  Thanks for responding, I appreciate it.
Not sure what an ANA titer is.
I saw an immunologist last week.  He believes all of my problems are stemming from a gastrointestinal issue, namely, gastro-reflux.  He believes if I can get that under control, my symptoms should begin going away.  I'm a bit skeptical, but I'm willing to at least give it a try.  He said if it doesn't work, he'll run a complete immunological profile in 3 months. 
So that's where I'm currently at.
Southern Harmony

Regular Member

Date Joined Nov 2013
Total Posts : 167
   Posted 12/19/2013 10:42 AM (GMT -6)   
Well, let us know what happens. I am usually over at the fibromyalgia forum, just jumped over here to check it out because I think some of these symptoms fit me as well. That is the thing with these darn diseases, they are so variable.

Any way, good luck and check back.
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