Again, PLEASE call/email Dr.Richard Burt, Chairman of Immunology Dept of Northwestern University Feinberg Med Center in Chicago. He has been curing (my word, not his) CIDP for several years. My son and 2 others I know have been years with no more meds & no more treatments, because there is no more disease. Northwestern is a first class hospital, not some back alley shop selling hope. But my son found no one at UCSF, Stanford, or Mayo in Minn. who even knew of it. Your doc will not tell you about it, you'll have to research it yourselves. Altho I did meet a woman with Scleraderma (also autoimmune) who was a patient at Kaiser, whose doctor said "please don't tell anyone I told you this, but do see Dr. Burt at Northwestern Univ." So word may be leaking out but it has been suppressed for far too long- a total mystery to me. My son's Myelin had grown back in a few short months, he was walking within a month after release. Blue Cross initially refused to pay for it, family did, but after he was well he fought with Blue Cross which eventually reimbursed the Hospital which reimbursed us. I sincerely hope you take this tip. Just Google Dr.Burt if nothing else.
Clearly if the usual treatments had cured the patient, Dr. Burt's treatment would not be necessary. In my son's case, all of the old standards had failed. He'd gone from running a marathon July 1 to being unable to walk to walk, use his hands, hold himself up in a chair, and his neurologist at UCSF was anticipating the need for a respirator shortly. She had nothing to offer except more of the treatments that had failed to even slow down this malignant case of CIDP. Chicago is a long way from the California Central Valley and believe me, he would not have gone had Stanford, UCSF, or Mayo Clinic in Rochester had anything to offer. He had exhausted all traditional avenues when he happened across another of Dr. Burt's patients online, met & interviewed her, & concluded the course of their disease had been exactly alike. She had been a San lFrancisco cop, unable to even turn over in bed when she was taken to Burt. Hard as it is to believe, she Haltingly walked out of the hospital at Northwestern. Northwestern University Feinberg School of Medicine is a First Class hospital, no back alley storefront selling hope.
I underwent hsct 6 1/2 months ago with Dr Burt. I have never felt better in my life! I failed steroids, Cellcept, Ivig, & Rituxan. I was getting plasma pharesis 1x a week just to keep me out of paralysis. Today I can run! Does hsct stop the progression of cidp & give your body the chance to heel & get back to normal? Absolutely!!
Great Heather ! So good you're blogging currently. As my son's case was nearly 5 years ago no, people are just skeptical. I reapeat THERE IS NO REASON TO HAVE TO LIVE WITH CIDP. But when people are sick, frightened, and have put their lives in their doctor's hands, and that doctor either has never heard of Dr. Burt or deliberately won't tel them about him, that raises much skepticism. I do know that the Pulmonology & Neurology Depts. of UCSF know about this treatment but are not telling their patients. My son's neurologist at UCSF even thought it was bone marrow transplants used for cancer. If you fit into Dr. Burt's selection perameters you will be accepted and it will work! All the plasmapheresis, IVIG, etc. only controls the symptons. These treatments are NOT A CURE. The disease is relentless. My son has now been WITHOUT MEDS OR OTHER TREATEMENT (because there is no longer any disease) for over 4 years. He has recovered 99% of his function, leaving pain in his feet which is probably permanent. If anyone has a cure for that TELL ME. But from where he was this has been a miracle. Helen Danhakl