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What am I actually supposed to be doing to get better?
Post-COVID Recovery & COVID-19 | Last Active: Jul 28 9:27pm | Replies (53)Comment receiving replies
So true, this group really helps. Had an appointment with a neurologist today who squarely told me that none of my long list of LC sympoms are real. He puts them all down to Post traumatic stress and anxiety after having finally got covid after dogding it for years. I told him a have been bedbound for the past months and am unable to leave the house as I am physically to weak and unable to walk the stairs back up. He said the fact that I am not leaving the house is a clear sign of depression. He also put the POTS down to anxiety solely. I asked him if he could look into some of the meds such as LDN etc and he said all the LC clinics recommend was antidepressants which again proofed his point. I was in shock and disbelief that four years into this doctors are still this ignorant and gaslighting us!
The knowledge on LC is existent, why does it not reach the medical community?
Replies to "So true, this group really helps. Had an appointment with a neurologist today who squarely told..."
Wow, Gerdi, I find this infuriating. We can't spend time with doctors who are unhelpful and unwilling to learn new stuff, we don't have the energy for it. What he did is called "medical gaslighting" -- you can look it up -- others on this board have had similar experiences. What he meant to say is "I don't know what this is, so let's pretend it doesn't exist." Please keep reading others' experiences similar to yours. I'm an LCSW with many years of experience treating depression/anxiety/etc., and I find his uncaring approach to be dreadful. If he's not a specialist in mental health treatment and believes you're depressed, he should have referred you to a mental health specialist for a proper diagnosis. BTW, most of us are suffering from a very depressing life circumstance -- we have a debilitating illness that so far has not been handled well by the health care industry, nor do we have much optimism about helpful treatments in the near future. Even diagnosis (as you've discovered) is hard to come by. It is depressing... but it' not all in your head; it's all over your body. Doctors need a lot more education in this matter; my PCP is grudgingly learning from me, not that she's had much to offer in the way of help, but she has finally written the diagnosis of LC into my records after all those tests came back "normal." Good luck to you; you'll learn a lot from others in this support group; you're not alone.
Your Neurologist is absolutely WRONG to say LC clinics offer only SSRI! Actually my LC doctors are the only ones who have not offered SSRI. They understand that this is NOT all in my head, but is an actual physical condition that is causing me such distress that YES, I do feel depressed, but it is not my root problem.
I’m about to begin LDN treatment and I sure hope it helps me.
Good luck to you.
I have similar symptoms, including POTS. My neurologist said my symptoms are similar to the data coming out of Northwestern University. A few of my other doctors gaslit me before this and I had none of it. Go find another doctor. I had to go through quite a few. The ones I found that are open to LC and LVS have significantly better college education (Yale, USC, UCLA, etc) than the previous doctors. Go shop for one based off of their educational profile and where they interned.
There are some doctors that are an embarassment to the medical community. Too bad you found one of them. So sorry for what happened. Hugs to you. May you soon find a caring, compassionate practitioner who understands long-COVID.
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That's terrible, I'm sorry you had to deal with a Dr who is unwilling to acknowledge and validate LC. I've noticed some Drs are still afraid to discuss or contemplate anything Covid related. I feel like they have Covid PTSD or something, I don't know. Clearly, you need to find a new DR!!