A disturbing experience with the Institute for Neuro-Immune Medicine

[Centime Tara]

I hesitate to post this because I know that this place has helped a lot of people, but I don’t feel right about keeping silent either. I’ve been seeing a doctor there via Zoom after an initial appointment in person. I flew down to Miami at some expense and was impressed with my first visit. The doctor (not Nancy Klimas, who runs the place) spent a long time with me, was easy to talk to and seemed knowledgeable. Since then I’ve had three Zooms with her, in which I felt she was thorough and concerned. I like her a lot! BUT: she has given me three pieces of erroneous information, and I’ve lost faith in her. 1. She told me I should get off Seroquel, of which I take a tiny dose for sleep, because it counteracts the effects of the antidepressant (an SSRI) that I take. 2. She also told me to get off Wellbutrin, which I’ve been on for years, because it causes anxiety. Finally, she put me on a thyroid drug (Levothyroxine) because my morning cortisol was slightly high. I just saw my psychiatrist, who is a psychopharmacologist, and he said that actually Seroquel boosts the efficacy of SSRI antidepressants, and that while Wellbutrin can cause anxiety if the dose is increased too quickly, it‘s highly unlikely that it would cause anxiety in an ongoing way. He felt she was misinformed about both drugs. I did a lot of research and all of it backed him up. As for the thyroid, I saw my endocrinologist and he said that prescribing Levothyroxine for a tiny (subclinical) elevation of cortisol was flat out wrong. He explained that cortisol is controlled by the adrenal gland, and that the thyroid is on a different biochemical loop entirely, and that her recommendation made no sense. So I’ve decided to stop seeing her, which is very disappointing because I really hoped that they could help me. The Institute for Neuro-Immune Medicine is considered one of the pioneers of treatment for ME/CFS, so this is especially upsetting. I wonder if anyone else has had a similar experience?

 

[Creekside]

I think there's a lot of misinformation and outdated information taught in medical schools. It is a good idea to research whatever the doctor tells you. Prescribing T4 for a problem that isn't thyroid related seems flat-out wrong, and potentially harmful.

I wonder how many people are out there taking handfuls of pills each day due to such clueless doctors. Some of those pills would be prescribed to treat side effects caused by the other unnecessary pills.

 

[nellybob]

I’m sorry to hear of your experience. I started seeing a lady there in April. So far I’m not making progress. I like her but was disappointed in my last telehealth visit with her. She said I’m really not a CFS patient because I can go out and “do things”. i don’t work anymore and I’m on disability. There are CFS patients that are able to work. So what makes me different? I just started crying and feel hopeless. If I do go out and do anything it’s necessary Things like groceries or doctor appointment. And Im exhausted when I get done. My entire body throbs with the deepest fatigue.
I wonder if we saw the same person. I guess I had bigger expectations of them. But I’ll continue my appointments for now. It’s all I have.

 

[Creekside]

She said I’m really not a CFS patient because I can go out and “do things”.

She's clueless about ME. Symptoms vary greatly between individuals, and vary over time. Some of us don't suffer the physical limitations that are common; we can do strenuous physical activities without problem, yet suffer from neurological symptoms from ME. I had PEM from physical and cognitive exertion, but managed to cure myself of the physical-triggered PEM, but still trigger from cognitive exertion and have baseline ME symptoms, so the lack of physically-induced PEM doesn't mean I don't have ME.

We're supposed to trust doctors, but unfortunately, we can't, because many (most?) are not properly educated about ME and may have been taught incorrect information about ME.

 

[nellybob]

So I’m thinking of switching doctors there at the same clinic. I was wondering if you’d share with me who you saw so I don’t see her. I’m not sure if any of them will help but my options are so limited.
I hate to sound dramatic but I just feel hopeless.
I’m so stuck. I test negative for lupus, myasthenia gravis, Lyme and Sjogrens.
There’s something broken in my body. Thanks