Strange Symptoms, Doctors unable to diagnose - Allergies Message Board

CSECZKO · 07-12-2003, 10:23 PM

I am surfing the web in desperation..Here is my story. Almost 2 years ago I had a complete hysterectomy at the age of 38. One week after the surgery I developed hives throughout my scalp, these were painful, burning, and itchy. between 5 & 6 weeks postop I developed staff infection in my incision and they had to reopen my wound on several occasions to remove the sutures (they would not disolve).. my recovery lasted 6 months...my hives on my scalp took 18 months to disappear from that location and to show up in my chest and stomach and pubic areas. I also have had swollen joints, low and high grade fevers, heart papatations and soar throats. That brings me to the last 8 weeks. My hives are now in my stomach to leg area (my doctor laughed and said that maybe the will eventually end up out of my system if they keep traveling downward..smile), I have a continuous soar throat, painful/ burning tongue, excessive saliva formation, low grade fever, headaches, spontaneous congestions(comes and goes within a hour), sparatic sneezing attacks and excessive fatigue (I have to nap several hours a day)...my white blood count spikes up and down from 15,000 4 weeks ago to 3,000 this week...my symptoms have become worse over time. I have been treated 1.5 years with claritan, I am on a hormone replacement therapy (I have tried several types over the past two years with no symptom reliefal times)..I have seen ear nose and throat doctors, allergies, rheumatologist, etc. to no avail. They just say that they have never seen this before. I recently was given two separate antibiotices that improved my symtoms until the dosage ran out..I also have been on Nystatin for 1 week with some improvement until I missed a couple of doses yesterday. Any suggestions? Anyone with similar types of experiences since having a hysterectomy.

PurpleMoon30 · 07-13-2003, 08:53 AM

I never had any systems like yours after my hysterectomy. I was 22 years old..8 days before I was to turn 23. I had already had two kids...2 years prior to the hysterectomy. For 3 years I was cut open...2 c-sections and finially my hysterectomy. After that I got really depressed and so forth. I didn't take any anti-depressants nor did I take any hormone replacements..(my choice) Seven years later I think I am in better shape not haven taken all those medicines that the doctors wanted me to take. I do have heat flashes, mood swings and all the above. But I can handle them...others may not..but I can.

Have you ever not taken any of the mediciations that they give you? I understand about the staff infections...your body may not like the desolveable stitches....I had them as well...with my first child it was really bad...."the cause"...bad doctor(didn't care about anything)...now my scar gets irritated because of hair growth....I can't stop that.

Maybe going to a different doctor..maybe in a different state....one who specilizes in problems like yours. It took my going across 3 states to figure out why my first c-section was bad.

I know I didn't answer your question..has anyone ever had your systems...maybe someone will though...good luck and hope you are better..

KorkyDog · 08-01-2003, 12:54 AM

Hi. Have your doctors blood tested you for other infections that may not be related to the hysterectomy such as Lyme Disease, just as an example, etc.? It may be worthwhile to call one of the bigger hospitals in the country, even if it means traveling. How about Johns Hopkins or the Mayo Clinic? Someone may have seen this before in a hospital such as those.

jboon · 08-01-2003, 07:53 PM

Like the person who posted before me, Lyme was the first thing that came to my mind when I read your symptoms. From what I've heard though, you need to be really specific about which blood tests you ask for when being tested for Lyme. There are also co-infections that can accompany Lyme. You may want to read the Lyme thread on the healthboards. It could also be that your body hasn't completely rid itself of the infection you got post-op. I'd continue seeking out answers until you're satisfied.

carolelizz · 08-06-2003, 02:14 PM

I'm not a doctor or microbiologist, but I did read a case study of a woman, 38, who within a year of having a child had a sudden onset of hives, joint pain, epigastric pain, low grade fever etc... She tested positive for the bacteria Helicobacter pylori. This bacteria has been found to be the leading cause of peptic ulcers but as with all bacteria so much is unknown. One text book I read states that a few antibiotics in combination will improve conditions. Who knows, it might be something to research or test for. Hope you feel better soon. I was recently diagnosed with dermatographism so I know what it's like to itch and burn, scratch until your body is covered with scabs. Take care.