Discussions By Condition: Allergies

Autoimmune disorder

Posted In: Allergies 4 Replies
  • Posted By: V. Peterson
  • November 30, 2008
  • 06:17 AM

My son-in-law, 29 years old was perfectly healthy until Dec. 30, 2007. He presented with malaise, diarrhea, and then onset of bloody stools. His s/s progressed to joint pain/swelling, dysarthgia, hives, fever. Admitted to hosp. on 3rd ER visit.. Jan. 6th. He remains in the hospital, has never gone home, and has been in 3 university hospitals. Within 1st week of admission to hospital he went into acute renal failure, was on dialysis. His Plt. cout was 30-90, receiving plasma pheresis daily for couple of weeks. Fevers as high as 105. Lymphadenopathy throughout his body.. negative for lymphoma. Cont. chronic diarrhea in the worst way. He was intubated on ventilator. He then had Hemolytic Uremic Syndrome, and TTP. They often suspected vasculitis, he had severe abd. pain. Sludgy galbladder. At second hospital, cont. chronic diarrhea, abd. pain, nausea vomiting. The kidney failure resolved. He was off the ventilator, tracheostomy was healing.. (also, at first hospital he spontaneous bilat. pulmonary hemorrage post extubation from ventilator). He was then diagnosed with Chrohn's disease and treated with methotrexate.... and subsequently was back in ICU 10 days out from receiving the methotrexate. In april he was then transferred onto a 3rd hospital where they determined that he did NOT have chrohn's disease. However, by now he is sloughing off his entire mucosa lining of GI tract... still has diarrhea, nausea and vomiting, and severe abd pain. Also was positive for CMV. Again they ruled out lymphoma. They have worked him up for every disease known to no avail. During this admission they determined that he had no B-Cells, and immunodepressed.. They started giving him IVIG. He has had repeated infections since the begining of the hospitalizations, too numerous to count. With the onset of infection, he will spike fever, have a rapid heart rate, the highest was 180.. and total malaise, he almost can tell you as it is starting by now.. if this goes untreated, he can be septic withing 48-72 hours. At one point was re-intubated and on pressors (medication to sustain his blood pressure over 90 sytolic) and redo of his tracheostomy.
There obviously is much more detail I have left out. point is,my son-in-law is dying. He has lost over 100 lbs to date. He still cannot eat. He can barely roll over in bed, and can take a few steps. He has severe malnutrition, protein enteropathy, severe malabsorption, still has diarrhea, nausea vomiting. He now is on an investigational drug to help reproduce the mucosal lining of his GI tract.. cont. on IVIG to no avail. They are telling us a bone marrow transplant would probably not help. I'm not sure. We are desparate.
If anyone out there has any ideas, thoughts, suggestions, Please help. I have a almost 3 year old granddaughter, and I can't bear the thought of her growing up without her father. We are living a nightmare. My son-in-law has become so depressed, he barely will make eye contact, and little to no conversation.
Thanks so much, sorry so long letter..

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4 Replies:

  • Oh, V. My heart goes out to you and your family. There is nothing more frustrating than living with an illness to which no treatment helps. I have absolutely no knowledge about any of what you've said, but I do have a suggestion: do some research. Since he's been tested for 'everything' and no new diagnosis, I'd start from scratch. Use the Symptom Checker on this site and consider vitamin/ mineral deficiencies that could produce his initial symptoms. Vitamins, I've found, are like hormones in that they have a wide range of 'normal,' and as a result may have been discounted previously by his doctors. This site has some wonderful links including 'other (illnesses) with these symptoms,' etc. It is what has helped me and made sense to me. I also found other symptoms that I didn't realize WERE symptoms lol and has led me down the path of healing (mine appears to be the cause of B-12 deficiency b/c I've had a sinus infection for at least 6 years. I don't have insurance so it hasn't been confirmed by a doctor, BUT taking B supplements are helping so to me, 'the proof is in the pudding.') Truly, all the best to you!Shannon
    lawwinner 3 Replies
    • January 2, 2009
    • 03:20 PM
    • 0
    Flag this Response
  • My son-in-law, 29 years old was perfectly healthy until Dec. 30, 2007. He presented with malaise, diarrhea, and then onset of bloody stools. His s/s progressed to joint pain/swelling, dysarthgia, hives, fever. Admitted to hosp. on 3rd ER visit.. Jan. 6th. He remains in the hospital, has never gone home, and has been in 3 university hospitals. Within 1st week of admission to hospital he went into acute renal failure, was on dialysis. His Plt. cout was 30-90, receiving plasma pheresis daily for couple of weeks. Fevers as high as 105. Lymphadenopathy throughout his body.. negative for lymphoma. Cont. chronic diarrhea in the worst way. He was intubated on ventilator. He then had Hemolytic Uremic Syndrome, and TTP. They often suspected vasculitis, he had severe abd. pain. Sludgy galbladder. At second hospital, cont. chronic diarrhea, abd. pain, nausea vomiting. The kidney failure resolved. He was off the ventilator, tracheostomy was healing.. (also, at first hospital he spontaneous bilat. pulmonary hemorrage post extubation from ventilator). He was then diagnosed with Chrohn's disease and treated with methotrexate.... and subsequently was back in ICU 10 days out from receiving the methotrexate. In april he was then transferred onto a 3rd hospital where they determined that he did NOT have chrohn's disease. However, by now he is sloughing off his entire mucosa lining of GI tract... still has diarrhea, nausea and vomiting, and severe abd pain. Also was positive for CMV. Again they ruled out lymphoma. They have worked him up for every disease known to no avail. During this admission they determined that he had no B-Cells, and immunodepressed.. They started giving him IVIG. He has had repeated infections since the begining of the hospitalizations, too numerous to count. With the onset of infection, he will spike fever, have a rapid heart rate, the highest was 180.. and total malaise, he almost can tell you as it is starting by now.. if this goes untreated, he can be septic withing 48-72 hours. At one point was re-intubated and on pressors (medication to sustain his blood pressure over 90 sytolic) and redo of his tracheostomy. There obviously is much more detail I have left out. point is,my son-in-law is dying. He has lost over 100 lbs to date. He still cannot eat. He can barely roll over in bed, and can take a few steps. He has severe malnutrition, protein enteropathy, severe malabsorption, still has diarrhea, nausea vomiting. He now is on an investigational drug to help reproduce the mucosal lining of his GI tract.. cont. on IVIG to no avail. They are telling us a bone marrow transplant would probably not help. I'm not sure. We are desparate. If anyone out there has any ideas, thoughts, suggestions, Please help. I have a almost 3 year old granddaughter, and I can't bear the thought of her growing up without her father. We are living a nightmare. My son-in-law has become so depressed, he barely will make eye contact, and little to no conversation. Thanks so much, sorry so long letter.. I am so sorry for your ordeal. My prayers are with you and your son-in-law. Did they ever diagnose him with e coli infection? Did they rule out clostridium difficile infection? Was he out of the country prior to these initial symptoms appearing? Has he seen an infectious disease specialist? Slippery elm is an herb to help with the mucosal lining of the intestines. His symptoms are so severe I don't know if this would be helpful but probably wouldn't hurt to try. I'd also try Essiac tea - google for info. Best wishesDOM
    acuann 3080 Replies
    • January 2, 2009
    • 03:36 PM
    • 0
    Flag this Response
  • Thanks for comments. He had MRSA the first week that tested positive in his stools, yes this is not common and the Dr's blew the first one off as contaminated, the second specimen, they scratched their heads and ignored... That has always bothered me, there can be a first for anything. He has never had E. Coli in his stools, he has had VRE. And C-diff. numerous times.. actually at every hospital. It is now Jan.2, 2009. and Billy is no closer to going home, nor has he been home since Jan. 6 2008. He has started making a few B-cells, but no immunoglobulins.. We are awaiting results on a follow up to the re checking b-cells. He has not been out of the country prior to this. Since we have been to 5 hospitals, Infectious disease has seen him at every hospital. I will look into slippery elm herb and see what we can do. Thanks DOM.SHANNON, I appreciate your comments, and I have done a lot of research on Vit. and minerals... and will cont. to do so. We are at such a loss. If you google BILLY'S DISEASE, he is now on Youtube with my daughter and granddaughter... Thanks for prayers they mean a lot and we are feeling desperate. A YEAR IS A LONG TIME FOR ANYONE TO LAY IN A HOSPITAL BED, TRAPPED HEPLESS IN YOUR BODY.. VICKI PETERSON, RN DID I MENTION I WAS AN RN?
    Anonymous 42789 Replies
    • January 2, 2009
    • 09:52 PM
    • 0
    Flag this Response
  • Regarding Billy's disease... I just wanted to follow up with a concept that might catch on to help us with Billy's disease. This is in hopes that if we can get Billy's story out there, there will be a Dr. somewhere that has seen Billy's disease and would be able to finally help Billy onto the road to recovery. Instead of "pay it forward" (phrase from movie), just "PASS IT FORWARD". If one person that reads this story could just share it with one person that could pass it on to one other person. I am certain, we can find this one Dr. we are so desperately looking for. Just a thought, it is so very time consuming for myself and Billy's sister to continue writing and blogging on all these websites to promote Billy's story.. we could use some help.... we love the suggestions from bloggers, and try to keep up with follow up as much as possible to answer questions. Thanks for all who Read Billy's story, make comments or suggestions or simply PASS IT FORWARD!!!!!!!!!!!!!
    Anonymous 42789 Replies
    • January 17, 2009
    • 08:44 AM
    • 0
    Flag this Response
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