Phenomenal information. This answers so many questions that I’ve been seeking for years about symptoms that I’ve had for decades. Thanks so much to Dr. Pace and all the great people at the BHC for sharing this ❤
It's great to hear a skilled talker explain her medical and research expertise in an understandable way. As a MCAS/POTS sufferer, this was really helpful. The fokus on diet point and to try to find the triggers has helped in the past for me. Will be interesting to see if the novel diagnostics can help to find the triggers in the future.
Boy oh boy..... "failure to thrive" thats me I got sick in a motel room way back in 1981. I didnt find out till decades later that many many other people got sick all over the world at this same year(1981)...this according to another researcher. So yeah i went around for decades trying to get help...but it fell on deaf ears then in 1993 all hell broke loose.i had no idea a person could become as sick as i once was.....150+ symptoms.i think i was near death. the pain so bad i was going to try go getting the gun but thank god i couldnt get out of bed. One dose of horse ivermectin completey changed the coarse of my illness...definitely killed something off....change for the better but a long way from healthy. I wonder, could a canadian go to the Bateman horne center? I gave up on this "broken system" up here in Canada....heck they discontinued that gutcam, for what reason, ill never know.such an important tool My fight continues
I have a question. How do you get tested or evaluated for all these things she’s talking about? I’m 100% convinced this is me but I can’t find the right specialists. Thank you
Ugh - I have been suffering for 13 years - most doctors have not listened to me....I was told for 6 years that it was all in my head....I have anti-FGFR3 antibodies...interestingly....in 2017...I did not have them yet....however...in 2020....the test came back at 9,000 (range is 0 - 3000)...on IVIG now...have been for about a year...interested in the AIAES test at Mayo Clinic...I know IVIG can skew the results - Mayo states that test is 'recommended' prior to commencement of IVIG...but since I am on IVIG....is there any value in that test? I also have Gastroparesis...and I also have Grave's Disease so there is definite Endocrine invovlement. In 2015...I had very high titers of EBV, also high titers of IgG for HHV-6, CMV, HSV-1...interestingly....had very low IgM (total IgM)...and later also low IgG...so hypogammaglobulinemia...also Copper defiicency....I have never had gastric bypass surgery or anything - so why the Cu deficiency? Also have very bad GERD...also have Chronic Venous Insufficiency now....had mast cell stains done on biopsies of esophagus, stomach, and duodenum....all came back with normal expected mast cells....grade b inflammation was noted on the biopsies....whatever that means....had bone marrow biopsy in 2017....cd 34+ blasts seen even on the megakaryocytes....dysmegakaryopoeisis....no ringed sideroblasts....diagnosis of narcolepsy without cataplexy...also have a dx of chronic fatigue syndrome, small fiber neuropathy, erythromelalgia, fibromyalgia, and complex regional pain syndrome....what would be a direction that you would suggest that I aim in? Since a large percentage of the immune system is based in the gut....it seems logical to me...I'm aware of the vagus nerve research....vagus nerve stimulator? supplements? what kind of immune modulator are you talking about in the latter part of your speech? I'm on Medicaid at this point....is there a way to get coverage at the Bateman Horne Center for ppl like me that are now stuck on Medicaid? I'm a willing participant to generate more data from...I want and need and deserve to feel better...
You have a good perspective on your symptoms and tests. I hope you get an answer, especially because my son has the same issues and my questions are similar. 🙏💕 positive vibes to you!!!
I feel depressed listening to this. What point is there me as a patient knowing this if every doctor around me doesn't? How do I get to this? I can't even get to it privately.
I highly suspect I had covid despite negative tests. I have since been vaccinated. Is there a way to tell if you have had it naturally once vaccinated?
Yes, you can test for covid antibodies. The vaccine protects against the spike protein and the antibodies for the virus are different so you can test for them.
