This is Lesa's story. She has decided not to take the IncellDx protocol medication due to health concerns but I wanted to share her account with you so you could see the processes involved in getting the test done and what the test results look like.
"Firstly a little bit about my Long Covid history- I’ve been ill since March 2020, and was not able to get a PCR test because I did not have a fever. Thankfully I was never “sick enough” to go to the ER…
My chronic Long Covid symptoms include: dizziness, brain fog, fatigue, ear & sight sensitivity, inflammation, body aches, nerve pain, memory loss, Mast Cell Activation Syndrome, upon other things.
For all of 2020, and much of 2021 I have been gaslit by doctors because I did not have a positive antibody or PCR test. The reason for contacting IncellDx was the idea at first to get the Cytokine panel done. With this I was to be able to have a formal Long Covid diagnosis so doctors would take me seriously, as well as provide me access to disabilities if I ever needed them.
This, of course, was prior to the CDC establishing Long Covid guidelines.
The IncellDx team was very helpful, kind, accommodating and quick. After filling out a contact form and emailing them, they sent me instructions to get a blood panel done, overnighted a kit that I would take for the blood draw, and offered to send someone to my house if I didn’t have an option to get a blood draw nearby.
My results came a few weeks later, but the appointment with one of their doctors was several days after that, which gave me a good window of time for my anxiety to rise, as I had no idea how to read this test at the time. This my lab test (Lesa has given me kind permission to share):
Lesa's sCD40L is raised -
Marginally above upper limit-
Marginally above upper limit_
I met briefly with a DR on the IncellDx team remotely, who explained all the cytokine markers, and said essentially my “blood vessels are on fire.”
I have been diagnosed with inflamed blood vessels, damaged blood vessels and platelet aggregation. He recommended I take:
low dose Prednisone (steroid)
for a month, and then within a few weeks check back in to tell them how I’m feeling.
In order to get these treatments I needed to meet with another doctor who would prescribe them to me. They also come up with a Long Covid index, which is their own measurement that really has no meaning… like a high index level doesn’t mean you’re more sick than another patient.
Also, after you do the protocol, the only way to know where you are at cytokine level-wise is to have another test run. These are $360/each.
I chose a doctor within IncellDx’s network who claimed to be a “covid expert” *eye roll… basically I figured he is just an extra expensive pill pusher… anyways, that call was a very expensive $300 video chat where he had my list my entire medical history, then had me explain to HIM what IncellDx said (which should have been shared with him by IncellDX but he said his team receives too many faxes a day to be able to find whatever they told him). Needless to say I did not get a good impression of this doctor, but went ahead with the treatment anyways.
Somewhere in between these two doctor visits I had also done a separate blood panel with a functional medicine doctor who has since found that I had once had an EBV infection (mono/ glandular fever), which I had no idea, and I also have Small Intestinal Bowel Overgrowth, a weak gut immune response, issues with my pancreas and my liver functioning. All of these issues made it an easy decision for me to not take these experimental treatment protocol since I feel my body is not strong enough right now to handle it.
I do have some LC friends who have taken the protocol, and it has helped slightly a few people, but overall it hasn’t really moved the needle.
While the IncellDx team is very compassionate and wants to help, I think the only way I’d move forward with trying their protocol in the future is if I found a better Doctor to partner with me and oversee my care".