Who can be my Dr. House? I have a mystery illness...?
I will make this as short as possible. I am a 26 yr old female, in good shape and eat well. Ive had my gallbladder and appendix out. In march I came down with shingles (horrible pain). Two months later I had it again (sick all the while in between with every passing illness). In june I had a horrible sinus infection thing (maybe flu), I made lobster for my husband while I was recovering and had an anaphylactic reaction to it. Went to the doc to get tested, and had anaphylaxis from that. I had recurrent reaction 4 hours later when the meds wore off, then again in walmart days later from no known allergen. They put me on steroids, which took 6 weeks to taper off of and I was so sick I couldnt hardly do anything the whole time. I have had shingles twice again since. Every three weeks I get sick as a dog. I have this recurring illness no one can explain. Here are my symptoms
-Swollen glands (esp on the right side, and my face swells on the right side when I sleep)
-Ringing in my right ear, which comes and goes
-Extreme fatigue, I am falling asleep sitting up when I slept great lastnight!
-Stress intolerance
-Tight lungs, I feel like I am having a constant mild asthma attack
-Wierd symptom, but the asthma attack thing and coughing happens worse just before every bowel movement.
-Joint pain, most especially wrists and knees. Much worse when I am tired.
-Muscle aches, mainly lower back and legs
-Random low grade fevers (99.0-99.6 and Im normally in the 97.'s)
-Panic attacks (which I have never had before all of this)
-Skin flushing
-Pain where my liver is, and it is very tender to palpation
-Chest pain, bilateral. Only prominent when all of my glands swell (esp inguinal glands which make it difficult to walk when they hurt so bad)
I currently have all of these, but I now also have developed this skin rash I have had for two weeks. It looks like measles or roseola, but is not either. My primary care doc doesnt know what it is.
Here are my labs
CBC, CMP are fine, all within limits
ANA neg x 3 checks
Urine HIAA normal, but chromagranin A 86, then recheck 61.
Rheumatoid factor of 11, normal is below 10. But most people don't have it at all.
All other autoimmune labs are normal
Serum tryptase (for mast cell disorders) is normal
Halter monitor shows PAC's and PVC's, but I was cleared for cardiac
Lung function tests shows 9% improvement with meds, indicating bronchospasms
Labs are still out for lyme disease and chronic mono
My mom has Sjogren's, which they said is a big possibility for me. But the rheumatologist just blew me off and told me to come back in a couple of years so my labs will be more indicative. Frustrating.
In between these spells, I feel about 90%. Not much really bothers me and I have tons of energy, as I have my whole life. But every couple of weeks I am convinced I am dying of something. I am miserable, and it is really effecting my life. Then it goes away and I am okay. Someone tell me they have been through this and survived!!!
By the way, the specialist I have been to include
my primary care doc
2 allergy specialist
an endocrinologist
a rheumatologist
a cardiologist
I am asking because they are stumped
Answer by evilbucky
You should go to a specialist instead of asking an online community!
Answer by abijann
Ringing in the ears can be a sign of some medication overdose. Make
sure your doctor knows all drugs you are taking...this includes over
the counter, herbs, vitamins, minerals, etc. (let them know this is
happening)
The tenderness in the liver area could mean that your liver cells
may be damaged and possibly inflammation has developed which would
cause the liver to enlarge in size. However, you said they were testing for
Mono so this should cover the liver blood tests and also your immune system.
Sjogrens is a disease where the immune cells attack and destroy the glands
that produce tears and saliva(it causes dry eyes and mouth)...it is not
showing this on your test results...ANA.
Since your body is trying to heal and recover from the Shingles and other things...
it is quite common to be very tired and run down. Especially when your lymph
system is reacting to all this.
If you don't feel quite sure about the diagnosis your Primary doctor has stated,
I definitely would get a second opinion from a specialist. Your primary doctor
may even recommend one you could go to.
Best wishes
Answer by Ervin Downs
The last 6 years i have been dealing with lyme disease. I am only so many support groups its not even funny. I have seen this disease mimic so many other diseases
I am not saying you have lyme but if you have these symptoms I would see an LLMD (lyme literate medical doctor) ASAP
http://www.lymediseaseanswers.com/lyme-disease-symptoms/
If you think you have lyme be sure to get tested by a quality lad not the standard Elisa test
http://www.lymediseaseanswers.com/lyme-disease-testing/
Good luck and hang in there
Answer by Dekayel
A lot of people have been through this (or similar) and survived.
Sounds an awful lot like Lyme disease. But the test they gave you (the ELISA) may well come back negative--because that test is highly unreliable, and often comes back negative, even when the person most definitely has Lyme disease.
Recommend you read up at the following websites and see if anything here rings a bell for you:
Good sources of info about Lyme disease:
http://www.lymedisease.org
http://www.ilads.org
http://www.canlyme.com
http://www.lymeinfo.net
http://www.lymediseaseassociation.org
http://www.lymenet.org
http://www.igenex.com
http://www.lymedoctor.com
http://www.touchedbylyme.org
http://www.facebook.com/lymedisease.org
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