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Oredogg,
I've slept on this conversation, and had it in my mind most of the rest of the time since I first read it. Several ideas have come to mind as I remembered our previous conversations.
1) Since you are a physician, you are much better placed to help your wife than many other spouses. You have background medical knowledge and medical contacts. What you probably don't have is specific medical knowledge about ME/CFS. For that reason, I strongly suggest that you read the
ME/CFS Primer for Clinical Practitioners.
It contains information about etiology and pathophysiology. There is a section on Clinical Diagnosis including differential diagnosis and a Diagnostic Worksheet which you could use in collaboration with your wife's NP to find out if she has ME/CFS or a different treatable condition with similar symptoms.
You can follow that with suggestions from the Management/Treatment section. There are a number of treatments that could improve your wife's quality of life described in that section. If your NP won't try them, use your medical connections to find a doctor who will. (I don't know the rules in medicine, but I'm assuming it's unethical for you to treat your wife yourself.)
You will want to pay particular attention Section 6:1 Low Functioning Patients to learn about special considerations for that subgroup of patients.
IMO, the ME/CFS Primer is weak in the area of immune dysfunction, opportunistic infections and reactivation of latent infections. You might want to seek out other sources of information on those topics. Dr Jose Montoya at Standford University has done work in that area. You might also want to do some reading at the
HHV6 Foundation website.
2) Because you have medical connections, it will probably be easier for your wife to get appropriate immune testing than it is for most patients. Identifying and addressing immune dysfunction in ME/CFS might greatly improve your wife's condition.
The most common immune dysfunction in ME/CFS is low NK cell
function, not number, although some patients have low NK cell number also. This is not a common test, but you can have it done. I've had mine done at the Institute of Neuroimmune Medicine at NOVA Southeastern University, but I know there's a couple of other places that do it. You local lab will probably know. The blood needs to be overnight shipped, so you need to get everything carefully organized before you start. The test itself takes several weeks, so don't expect fast answers.
Another known, but less common immune dysfunction is low cytotoxic T-cells (CD8+). That test is easier to come by. There's no treatment I know of for that, but it will support insurance payment for abx and antivirals if she needs them.
It's probably also worth having IgM, IgA, IgE, IgG and IgG subclasses done to check for deficiencies there.
3) I understand and sympathize that your wife doesn't want to leave her bed to go to the lab or doctor. Nevertheless, she may need to do so at least once in order to get treatment to improve her condition.
Careful planning can reduce the impact of the trip on her health. I have traveled by wheelchair with headphones in and eyes closed to minimize exertion and stimuli. At my worst, I traveled by car lying down the entire trip while my husband drove. One of my ME/CFS specialists had patients arriving at his office on a gurney. It is possible, even for severe patients to get to the lab or doctor, it's just not easy.
Yes, it's more effort than lying in bed, but worth it to get improvement in her condition. The trick is to not waste her energy taking her to doctors who don't know anything about ME/CFS and so won't do the proper tests, diagnoses, or treatments.
If you plan carefully, using the ME/CFS Primer (and perhaps some other resources) as your guide, you can take her to the lab one time and get all the important tests in one visit.
4) Since you are a physician, it
might be possible (once you educate yourself about the illness so you can talk intelligently on the subject) to have a physician-to-physician phone consultation with one of the top specialists to ask specific questions. The average person can't do that, but physicians give special consideration to other physicians under the guise of "professional consultation".
It is very possible that your wife's quality of life can be significantly improved with appropriate treatment. I'm not suggesting a cure or a return to normal functioning is certain, but big improvement is possible from her current dire situation. I was bedbound when I started. Now I'm largely housebound but able to work a few hours a day at a very easy job, do a little light housework, and make simple meals. That is a huge quality of life improvement for both me
and my husband.
There is hope. You just need to get educated about the illness and start appropriate treatment for your wife.
