Unfortunately some people that are skeptical of cci, like the twitter account “truthseeker”, have been putting comments from this thread onto twitter and making allegations that are pretty unfounded and inflammatory—- that particular account accused not just Jeff, but also David Kaufman!!!?? of being in on some kind of scam with Bolognese.
Thank you for bringing this to light
@Murph and
@debored13 and I tried to let it go but was just horrified by what I read. I do
not have CCI (in spite of having severe chronic neck pain) and just wanted to put that out there first. I also have no knowledge or opinion of Dr. Bolognese outside of the fact that he did an amazing job with Jeff's surgery which was life changing for him. I have known Jeff for 4+ years as a friend outside of PR and for anyone to insinuate that he has any motive to share his story other than a desire to help others is patently absurd. In fact the only other person I know of (from PR) who had this surgery (Mattie) had it with Dr. Gillette as his surgeon and has no connection to Dr. K or Dr. Bolognese.
What bothers me the most re: some of the comments are not only that they are "unfounded and inflammatory" as
@debored13 stated but they are also categorically untrue. Dr. K has been my doctor for 4.5 years and he not only figured out the root of my illness (autoimmune dysautonomia) but the proper treatments that led to my remission. A researcher contacted me privately a few days ago (b/c of sharing my story on PR over the past four years) and wants to publish my case in a medical journal. All of the people connected to this endeavor, including the researcher, know that Dr. K is one of the most honorable and respected doctors out there. They want to publish my case story in the hope that it can help others (and they have not even contacted Dr. K yet and just contacted me first).
I was getting 3-4 new PM's per week asking me to share my experience with IVIG and/or Rituximab (and I am sure that this is a fraction of what Jeff and Jen receive asking them questions). I am not skilled enough to create a blog or website, and my story is fragmented all over the place, but my sole desire is to help others and it is the same for Jeff. When you are deathly ill, and receive many different diagnoses, and multiple doctors tell you that you cannot be helped, and then you FINALLY find something that puts you into remission, you want to share it. For me the root problem was autoimmunity and for Jeff it was CCI. We shared many overlapping symptoms (like POTS & MCAS) but also had many different symptoms and we ultimately had completely different treatments.
It pains me to see false statements being written about people who I know and respect very much. Yes, much of this is anecdotal at this point and it is the best we have with such limited research funding. Many people receive incorrect diagnoses, or false psychiatric diagnoses, and receive no help whatsoever. The doctors who take on these challenging cases are the heroes in my opinion and I wish we had more of them. The last thing they need is to be publicly attacked. Thank you to anyone who read this.
