• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Using covid longhauler test on me/cfs patients

tyson oberle

Senior Member
Messages
212
Location
tampa, florida
Have any of you tested yourself with Dr. Bruce Patterson's covid longhauler tests even though you are not a longhauler. Has any me/cfs researcher tried this. I realize many of us are familiar with cytokine and lymphocyte tests, but I am wondering if any of you tested as a long-hauler even if you are ME/CFS without having had covid.
Have you yourself done these Covid longhauler tests? And if not, do you plan on it?
 

Andrew

Senior Member
Messages
2,523
Location
Los Angeles, USA
I should add something. He mentioned that his patients have post exertions symptom exacerbation in the form of a problematic non-classical monocyte reactivating. But he also mentioned patients who are still sick post-treatment, and the answer to this is exercise. I realize he is new to all this, and not focused on CFS. But he might not have the cure rate he thinks he does.
 
Last edited:
Messages
14
I did the Incell testing recommended by Dr. Bruce Patterson in Dec. 2022. When I had my video consult with him he noted after something like 24,000 tests he now has an algorithm for test results that differentiate ME/CFS from long Covid from Lymes. He said I was text book for ME/CFS, elevated SDL40 and VEGF but NOT CCL5 (I think those are the right acronyms). He has suggested the issue for us with these results is vascular inflammation and feels confident doing his protocol of Maravoric and Pravastatin for 4-6 weeks should help immensely. The muscle weakness/pain/achiness, hot and cold sensitivity, PEM, etc. I have the drugs in hand but haven't tried yet as I am in the midst of getting over my 2nd round of 2-4 week "fake" Covid - tests negative but feels similar. I am looking for others who have actually tried his protocol and found benefit?
 
Messages
14
Have any of you tested yourself with Dr. Bruce Patterson's covid longhauler tests even though you are not a longhauler. Has any me/cfs researcher tried this. I realize many of us are familiar with cytokine and lymphocyte tests, but I am wondering if any of you tested as a long-hauler even if you are ME/CFS without having had covid.

Yes, I did the Incell testing recommended by Dr. Bruce Patterson in Dec. 2022. When I had my video consult with him he noted after something like 24,000 tests he now has an algorithm for test results that differentiate ME/CFS from long Covid from Lymes. He said I was text book for ME/CFS, elevated SDL40 and VEGF but NOT CCL5 (I think those are the right acronyms). Apparently the long-haul Covid folks ALSO have elevated CCL5 which is what differentiates ME/CFS from long Covid - at least according to Patterson. I don't know what his markers are for chronic Lymes. I have another post I started to see if there is anyone who has benefitted from his protocol with ME/CFS... just posted it a couple of days ago. So far, no one has replied a "Yes"!
 
Messages
39
Hi @Tmonkyi

I'm considering this protocol and am trying to learn a bit more about it. Do you know if the pravastatin is taken at the same time as maravoric or before? It would be great if you could share any insight on the protocol.

Thanks
 
Messages
14
I haven't started it yet, but, yes - they are taken at the same time. Because I am sensitive to medications though I will start the Pravastatin first for a few days to see how I respond/react to it, and then add in the Maravoric.

The thing that isn't clear to me is length of time. In my video consult with Dr. Patterson, he said, take it for 4 weeks, and then retest but stay on it while you retest and he might recommend staying on it for 6 weeks. Although my experience with the testing is it takes two weeks to get the results - so basically he is saying 6 weeks and then check in with him. Dr. Bela Chheda who is my primary ME/CFS doctor noted that there was no evidence taking any of it longer than 4 weeks was efficacious. Then I saw a video with Dr. Patterson where he mentions taking it for 6-12 weeks and someone on a thread on this topic here in Phoenix Rising has been on it 6 months and is giving it a year!

I don't really want to spend the money to retest, so my thinking is, assuming I tolerate it, will be to stay on it 4 weeks and see if I notice any improvement at all and then I'll reach out to Dr. Chheda and see what she says.

Hope that helps a bit.
 
Messages
39
Yes that's very helpful, thank you. I agree with you - I would expect that if it is going to be effective you would notice some results after 4 weeks. Seems unlikely that it would only begin to work between weeks 5-6. Let us know how you get on with it when you decide to go ahead. And good luck, I hope it works for you!
 
Back