13 and sick for 10 months, any ideas? Feeling desparate!

[diligentmom]

My 13 year old daughter has been sick for 10 months (continuously) and we can't solve the mystery. Background info.: She was diagnosed with  salmonila poisoning at age 4 and had stomach problems ever since. She "may" have celiac disease (we took her off wheat/gluten 2 yrs. ago and made a huge improvement on growth, stomach pain, chronic sinus infections and need for abx. No one wanted to do endoscopy - so we just changed the diet. Blood tests are inconclusive. She has always gotten sicker than everyone else, with the fevers higher - lasting longer, etc. She has severe allergies - often leading to sinus infections over the years. She had two episodes of vasculitus in her feet when she was 6 yrs old after having strep. ANA back then was 1:640, Rheumatologists ruled out lupus, said it was strep that had gone to heart and was now resolved. She was an accomplished competative irish dancer but had to stop when she was having repeated foot problems (iselin's disease - growth plate not fusing with 5th metatarsal) back at age 11. CURRENT situation: she got an infection in her lip after bumping a friend's knee while playing..2 days later it was ***** and swolen. The pediatrician diagnosed strep w/o culture, it resolved with abx. Then, 3 weeks later she developed severe debilitating fatigue, fever/chills, flu like symptoms. We were told it was mono.We now know the mono test was negative, but pediatrician said it was "mono-like" virus and treated the same way. Those symptoms began to subside after about 7 weeks, she had about 3 good weeks, then it struck again in Oct. 2007. This time the cold was so bad she was just unable to get warm. It developed quickly to ice cold feet with pain, she was in wool socks, long underwear, down jackets at home, under covers. (We live in California -with mild winters). The cold feet would change colors -purple, bluish, sometimes yellow/orange too. I could always tell when her feet would start to go cold again or hurt - she would get a red rash on her cheeks. That foot pain turned into pins/needles and she was in a wheelchair by the end of November. Fever was always low-grade by this point. Joint pain w mild or no swelling, constant headaches/stomach aches too. Developed mild/occassional upper torso twitches/jerking motion. Referred to pain clinic (3 month wait) and ped. rheumatologist again. Rheum tested for JRA/Lupus - all came back neg. They said it was viral in nature and would self resolve in time - maybe a year from onset. They put her on sulindac for joint pain as she had previously developed acid reflux from a previous attempt to control joint pain with Aleve (TID). Pain clinic wanted her to see pysch. and go on neurontin. We put her into PT, slowly working on her. She began to experience sympathic and parasympathic nerve symtoms that were scary for her. Numbness, shooting pains, pins/needles, sweaty palms and feet, low grade fever, etc. I'm sure I'm leaving little things out here and there - but you get the idea. We started working with a bio-chemist that is an alternative med. doc (credentialed in western med.). He ran multiple tests. She is Vit.D deficient, low B-12, her neurotransmitters (urine sampled) are messed up, and various tests suggest possible mercury and lead levels that are too high. She also had a porphyrin test that came back very high. He put her on liposomal gluathione and various supplements, including high strenght probiotics. She definitely benefited from these - but they haven't taken care of the root problem. Chelation being considered - but she was deemed to unstable to be safe at this time. Many many blood tests have been done. We are told nothing is killing her - she is sick though. Her IgE is 2000, her ANA is 1:640. We went back to the allergist/immunologist last month and he said that he wanted her to try a corn challenge. He suspected un-treated fungal infection in sinuses could be cause of some of her problems. He ordered a CT of sinuses (CT 2 years ago showed chronic sinus inf) New CT showed less damage, but sinus infection was present. sShe was already on Ciprofloxacin for sinus infection diagnosed by pediatrician and he extended it for 1 month. Also - if symptoms stepped up pace he wanted her to try Prednisone. (This has been kicked around -but all mds wanted to avoid it) Recently things started acting up again - low grade fevers creeping up (this with sulindac 24h/d) feet getting cold again, intemittent numbness at various places on her body, racing heart with sudden slow down (ped. cardiologist ran echo - clean, sinus tachecardia confirmed - but normal).  Severe fatigue. We put her on the Prednisone w/taper down dosing. It was extremely hard on her - she was unable to attend school, leave the house, leave my side. She used Ativan to take the edge off, but cried much of the two weeks. NOW she has developed Thrush from the meds. Her head and stomache pain increased, the low grade fever never left, the heart still races occassionally throughout the day. Nystatin has helped considerably - BUT she continues to have severe headaches, stomach ache and believe it or not, yesterday the low-grade fever crept up to 100 degrees (this while on the sulindac and she had taken to Advil to try and cut the painful headache.) She has had constipation recently that required Miralix BID for 6 days. Now she continues on her previous regimen of sennecot daily.  
Current meds: protonics, cipro, sulindac, muscinex, xyrtec, nasocort, pulmicort in nasal rinse, nystatin (ingested), supplements (Vit D 2000iu, methylcobalamin 5mg, lithium, L-Tryptophan, Endotrex, Adrecor, Magnesium, Zinc, Senecot, Vit.C, liposomal glutathione, and therbiotics (probiotics). I know stress plays a part in this situation. She was attacked by a rotwheiler (sp?) dog when she was 5 -experiencing severe facial injuries that required surgery. 2 years ago both of her grandmothers became ill - one with life threatening illness - but she recovered. The other diagnosed with terminal cancer - but she is still alive, but on hospice. My husband and I are married for 17 years (only marraige for both) and our daughter is a fertility baby (with our egg/sperm). My daughter has always been a vibrant, vivacious, extremely intellegent girl. Always scoring at the top of her class, always successful in anything she does. She was pretty good in 7th grade when we had successfully changed her diet - we thought then we had solved the puzzle! She was chosen at the incoming 8th grade ASB president, and she was also given the position of drum major for the fall marching band. She persevered and did parades on pins/needles feet with fever and eventually her last parade was from a wheelchair in December. My daughter has always loved life, when feeling good she sings about her happiness throughout the house. This is not like her. She would not voluntarily give up her activities at school. She loves school and has suffered greatly from being on a reduced schedule. (Physically necessary but emotionally hard for her). FINALLY - the pediatrician has always contended that my daughter is suffering from an undiagnosable autoimmune disease that is the result of a virus. The fact that she was entering puberty is not lost on anyone and it is suspected that the increase in hormonal activity has triggered some of this stuff. The immunologist thinks it might be allergies "gone wild". The bio-chemist thinks it may be mercury/lead toxicity. Family historoy shows many significant autoimmune diseases - but most are removed from her by at least 2 generations. Any ideas?
Thanks for reading this - I know it is long and detailed.