4 months ago I had an acute episode of flu-like symptoms (low grade fever, chills, night sweats, daily sweating, headache, severe fatigue, dry cough). This was the most severe symtpoms I have ever had, to the point where I was unable to work. About a week later I saw an emergency room doctor who did a CXR (normal) and bllod work. My White blood cells were down to 2.4. He said that all this looks like a viral infection and wait it out. The following day I saw a microbiologist who thought that I might have mycoplasma and prescribed Biaxin XL for 5 days. In 24-36 hours I started having mild improvement in symptoms. But the improvement was incomplete. On the fifth day of Biaxin I became short of breath at rest. I saw a respirologist who did pulmonary function tests which were normal. He said I had hyperventilation for some unknown reason. He added 2 more days of Biaxin. The shortness of breath resolved over time.
My symptoms gradually improved over the next 2 weeks. They did not resolve fully. I then went back to work. I was cancelling work days left and right as I was getting more and more tired and became sick again. I saw another microbiologist who decided to give me Avelox x 14 days in case there was some remaining mycoplasma. On my first night of avelox, I had the worse night sweats I have ever had. Avelox did not improve my symptoms. I had to stop work as I was too sick.
I developed a severe headache and ended up in the emergency room 2 weeks later. Had a CT head which was normal. I was diagnosed with a post-viral migraine and given Prednisone 50mg per day for 5 days. The headache improved but the dry cough got worse. a Week later I had a lumbar puncture which was normal.
My symptoms have since persisted. I am very tired. Any minimal effort causes a recurrence of my flu-like symptoms (feeling drained, sweating, sensation of fever, mild knee pain, headache, head fog, pressure in ears, hoarse voice, dry cough). It then takes about a week of full rest (literally sitting on a couch all day long) to get back to an OK baseline.
I had a bronchoscopy with lavage 2 weeks ago. I became acutely ill (sweats, chills, headache, fatigue) the afternoon following the bronchoscopy. This resolved in 24 hours.
I have had multiple tests. My white blood count returned to normal. My CBC is normal, my liver enzymes are very slightly elevated. Many Chest xrays have been normal. A chest CT in march was normal. 2 head CT scans are normal. Lyme testing is negative 3 times (including at Igenex in California). Q fever is negative. PPD is negative.
I am currently on a therapeutic trial of Doxycycline x 1 month.
Does anyone out there have experience with a similar episode? What was the diagnosis? What tests did you have? What treatment did you get?
Have you had a mono test? Your symptoms describe me perfectly. I had mono seven months, and it took about six for them to figure it out. Get tested for this, as my liver was slightly elevated as well, which can happen with mono.
Also, check vitamin D levels. Too little of this vitamin can cause joint pain, as you aren't absorbing the calcium you need.
If mono is negative, go the autoimmune route and get an ANA test. Also, you may have CFS, so go see a rheumatoligist if all else fails for this diagnoises.
This sounds like CFS, or post-viral syndrome, symptoms to a "T". Of course I often forget though to remind anyone who has symptoms that could be CFS, to also get tested for lyme disease.
It is interesting that a microbiologist suggested that you have myoplasma. Mycoplasma has actually been discovered in patients' with CFS and that is why there are several treatment protocols for CFS that include antibiotics. You may want to search online for more information to discuss with your physician and also check out the CFIDS Association of America website.
Are your EBV antibodies staying the same in each test, dropping or rising? Have you had another doctor look at your test results? The reason I'm asking this is I had an infectious disease doctor tell me the same thing, that my antibodies were from an older infection. However, two other doctors disagreed with him when I showed them my levels. I had the test again, and my antibody levels were going down. With the levels going down, my fevers went away.
It could very well be another type of virus. But, get a second opinion on the mono results if you haven't already.
Also, PlatletteGal is right, research the CFS route.
I don't know about other sub level infections. But, I do know that there are tons of viruses out there, and it's a needle in a haystack trying to test for all of them.
From what I'm hearing EBV isn't the only virus that can cause CFS. There are many CFS patients' who have never even had mono or had positive EBV titers. You may want to ask your physician about CMV (Cytomegalovirus) and ask him to check your titer. I would also seriously consider seeing a Naturopathic physician. I've had nothing but positive experiences with alternative medicine. In addition, if you checked the CFIDS Association of America website, they will give you a list of other possible conditions that you may want to talk to your physician about.
I have checked all these avenues. CFS is a possibility. just want to make sure there is no other cause. Any known infections that can cause this? Did anyone hear of fungal infections which can cause my symptoms? How about a chronic mycoplasma infection?
If you're looking into CFS, I would look into hypothyroidism. You can have symptoms from both hyperthyroidism and hypothyroidism, if you have Hashimoto's Thyroiditis. Some people who have been diagnosed with CFS and Fibromyalgia really have hypothyroidism. I know, I was one of those diagnosed with Fibromyalgia when I never had it!
I've had hypothyroidism most of my life and with both hyperthyroid and hypothyroid symptoms. I've been erroneously diagnosed with Infectious Mononucleosis (1977), EBV (1978), Lyme Disease (1999), and Fibromyalgia (2000) when it was really this. All those tests came out negative (except Fibro which is rule out) and still the doctors at the time decided treat as if it were those conditions. And the Fibromyalgia was diagnosed by a Rheumatologist, confirmed by an Endocrinologist and a Dermatologist! Funny how all those symptoms disappeared with thyroid medication and then returned when my thyroid medication needed to be raised.
Right now I have some intense flu-like symptoms because my thyroid dose has been increased. Yet I remember suffering from this symptom on and off for years. And I got diagnosed with Lyme Disease in 1999 because some doctor couldn't figure out what else could cause my symptoms. The antibiotic did help me feel better but my symptoms all came back.
Found this while searching for another friend's symptoms. Did you have any exposure to farm animals or even domestic pets? Your symptoms do kinda with Q-Fever (caused by Coxiella burnetii). It's a long shot, but I thought I'd throw it out there.
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