I'm undiagnosed and chronically I'll and any helpful information in regards to tests or doctors is greatly appreciated.
- started when I was 21 I got staph infection all over face after going to water park on very hot day and being stressed. Anytime thereafter I'd get burning lips and rash around lips which was treated with acyclovir (anti viral) and small pack prednisone.
- after delivery of first baby and going back to work I developed burning lips with rash around lips and herpes outbreaks like crazy which doctors gave acyclovir only and no prednisone. It resolved the rash but I continued to have other symtpoms like left arm weakness, tiredness, low immunity catching colds easily and not being able to fight off herpes. I didn't get much sleep because I was Breastfeeding and working FT.
- symptoms continued and worsened. I was on acyclovir for eight months because it helped fight off herpes outbreaks on lips but stopped using it when I realized it wasn't helping all of my other symptoms. Like severe severe fatigue, night sweats, achy flu like. Burning mouth like on fire while out in very hot sun in palm springs and since my mouth tongue lips roof of mouth and throat still burn. Eyeballs burned and now I have only 1 mm tears. Ears burnt and hurt to sleep on them as they were very numb and now I have ear pain with tinnitus. Intermittent nasal pain behind nose and nose bridge to hammering pain and now no mucous in nose. Static feeling over brain one day and now constant burning scalp with severe hair loss. Dry skin. So called allergic to things like smells foods. My armpits would burn with deodorant and perfume burned my eyes. I had to take prednisone to even eat foods because I had so many reactions like metal taste in mouth after eating almonds and milk tasting like poison. Rashes after going in sun with biopsy of neck showing chronic inflammation with rare eosinophils and now I have chronic severe neck pain. I feel the base of my skull tingly. One night I woke up and couldn't breathe and lungs felt like they were on fire. Joint pain and cracking. Even my teeth hurt. Nerve pains - stab, shooting, electrical, burn. Dizziness. Diarrhea foul smelling.
MRI head not neck - normal
Ct scan with dye (which I reacted to and fainted) abdomen for lymphoma - negative
Ultrasound of liver because albunim was slightly elevated showed benign tumor.
ANA and antibodies negative with normal sed rate
Lip biopsy for Sjogren negative
Schimmers eye test showed 1 mm tears
Immune complex showed slight hyperactive (taken after steroids taken)
biopsy of rash showed chronic inflammation with rare eosinophils
Nerve conduction test normal
Tested for infectious disease like EBV, B19, CMV - no current infection
Mild protein in urine (taken after steroids taken)
Decreasing BUN and feel dehydrated
Countless lab work - CBC, Diabetes, TSH, tests all normal
IgA and IgG (subclass 1 & 2) slight deficiencies that docs say is nothing
General Lyme test - negative
Blood PCR - normal
Spinal tap - normal
EGD for celiac and whipped disease - negative
Ferritin always elevated around 150
As anyone can see I've had so many tests and really just want relief from this nightmare. If you have any ideas or know of doctors determined and dedicated to finding the root cause of symtpoms I'd love to hear about it and I really appreciate any help you can offer!