Life with Tardive Dyskinesia (Lyme too)

My work on TD is below. I’ve experienced it very much in my own way and written very little. Perhaps I’ll write more moving forward. My experience suggests systemic infection as it’s clearly involved with the various systemic infections I was diagnosed with as Lyme Disease. (Lyme is amorphous systemic infections that vary greatly from person to person depending on the combination of pathogens…if the organisms associated with Lyme disease is presnt you can say you have lyme disease…it seems to me many people have systemic infections complicated by heinous biofilms that don’t always get diagnosed as lyme…so I don’t really like that diagnosis as I think it’s lacking in clarity.)

Most people who have lyme disease and/or TD cannot afford the care we need. Regular medicine doesn’t want to deal with the expense we incur and so the only place we can get care is from practitioners who don’t accept insurance. We are left to die in agony unless we can afford such care. Besides care from practitioners who understand what is going on there are a lot of other supports that can help people be more comfortable. Again, most of them are cost prohibitive. Society and many of our families leave us because it’s overwhelming to them. This is the state of our life on this planet at this time. We all choose to shut out that which we cannot or do not want to deal with.

TD also varies greatly in severity. It seems the brain injury from long term use and withdrawal made mine severe in some pretty particular ways. I think that the drugs destroy the blood brain barrier allowing for opportunistic infection. That is how I experience the TD along with the Lyme. I look forward to getting to know others with TD and am scheduled with a group support meeting at the organization that made the video.

I have needed around the clock available care for many years now. This has financially devastated my husband and I as he’s needed to be available while we’ve had no support from family or “health” care. I am grateful for that care that many do not have. I still have endless needs that go unmet because of the cost of care is prohibitive.

I’ve posted a couple of times about having TD. It is an awful debilitating, crippling and disfiguring disease caused by iatrogenic injury. I just discovered the National Organization for Tardive Dyskinesia so I thought I would share. There is very little accurate or clear information about this disease. I have avoided doctors mostly as I’ve not encountered anyone that seems like they would do anything other than harm. Neurologists who treat TD are prone to use psych meds and the MDs I saw mostly shamed and dismissed me as crazy. I was diagnosed by a psychiatrist and it’s very clear that I have TD. There is nothing the medical establishment offers that isn’t pharmaceutical and those drugs cause things like “parkinsonianism.” Right, the side effects cause more movement disorders in a fair number of people. Isn’t that just like pharma? I need hardly say I’ve never looked into standard medical care for my already pharmaceutically broken body.

I go from being physically okay to being able to hardly stand up in the same day. I suffer from acute and chronic pain in my face, head, neck and shoulders. I am often totally unable to function as a result of this drug injury. I’ve written very little about it because this site was about recovering after coming off psych meds and well, I’ve got my mental health but I am not well. It’s likely I will never be well. My only goal now is to learn how to cope better. As readers of this site know I’ve exhausted all manner of behavioral and lifestyle healing methods. This is not an easy ride. I do continue with living with profoundly healthy habits that allow for some functionality on occasion.

Watch this video to learn more about TD from people living with it:

My pieces that include my early musing on TD:

• Micro-organism illnesses (Lyme disease and many others less popularly defined)
• Tardive dyskinesia and thoughts from the mindful healing process….
• be the snake: eat yourself
• A conversation with Will and Monica, Lyme and Dyskinesia

Tardive Dyskinesia

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