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    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.

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Low CDxx cell numbers


Senior Member
@Strawberry - they are ignorant, as @SOC says. Some do believe it is "attention-seeking behavior" (who thinks up these names! argghh!), and some are well-intentioned but definitely still ignorant. Actually, I got my GP to run a few tests re viruses and NK cell function and immune function, only he didn't know what to do with the results, even though there were abnormalities. He just gave me the results and it was up to me if I was going to try to do anything further.
Yup, this is why we need to see top ME/CFS specialists at this point in time to get the best treatments. Even well-intentioned GPs simply don't have the knowledge to diagnose, test, interpret tests for, and treat ME. Maybe that will change someday, but someday is not today.
Got an answer from a virologist regarding my test and symptoms. Hope this info is useful to others:

from the multipe negative HIV tests you did, it seems obvious to me that there is absolutely no evidence for HIV infection. So HIV is nothing, I would be concerned about at the moment.
I understand that you suffer from some kind of inflammation of the salivary gland,
but I do not think that this is related to an active virus infection.
However, from the information you gave me it actually seems possible that some (per se harmless) viral infection you acquired earlier (some years ago), triggered an autoimmune mechansim,
that now causes the symptoms of xerostomia and sicca syndrome.
However, in such a case the triggering virus would be long gone now, and it could no longer be detected and especially not clearly related to the symptoms you describe.
So, from a virologists point of view, for your actual problem there is no additionally virological diagnostics that come to my mind.
I hope that helps you.
When you have further questions, you can call me (Tel.: XXXXXX), since it is faster to give advice via the phone than writing everything down.


Senior Member
Well, all doctors I met until now (think over 100) fall into this category, so I am quite skeptical that I will ever meet other type of doctors. You can say that I was not lucky enough to meet the right doctors. But what is that probability, 0.0001% ?!? Actually after seeing more than 100 doctors, spending lots of money without any result, I am sick of these doctors. I can easily predict what the next doctor will tell me.:mad:

Yes, yes, yes.... doctors have playbooks, and if your illness doesn't match their playbook, then you're out of luck. Plus, they will often invalidate you on top of that (go to a shrink, it's all in your head) or patronize (eat better, exercise). If you go to doctor with the wrong playbook, but who has the sense to understand the dynamic, they might be able to point you in a reasonable direction where you could get some answers, but it's unlikely that they will send you to a CFS specialist.

Even w/in CFS, there are different playbooks. The Antiviral Playbook is right for me, but may not work for others, e.g., if mold and biotoxins are your chief problem, then AV's aren't going to help and so on. Usually it's a mix of problems, too..