Disbelief

I've never had complete #Faith in the medical/pharmaceutical industry, I guess because I grew up hearing how they always threw people under the bus in order to make an extra dollar. I read something a day or two ago that just will NOT leave me #alone . Everybody knows that Ketamine can be (has been) used successfully to treat people with treatment resistant depression, right? I heard 'Yep' all around. Well, it's 80% effective!!!!!!! It was approved for use as an anesthetic years ago. However, when it was found to be effective in treating this bi**h of a disease that refuses to go away, the FDA didn't approve the 80% success rate Ketamine. Nooooo, they approved a far less effective but similar ( on paper) version of some kind of something because it would make entirely too much sense to go ahead and approve the drug that has already BEEN approved for use (to put people to sleep for crying out loud!!!). Instead, let's help this company over here make a KILLING off of the disease that is killing America! Maybe that's not how it is but from where I'm sitting in a puddle of desperate and burning need to get out from under this gray? It sure seems to be that way.  
So, Ketamine IS available for off label use, which means insurance won't cover it. And each treatment course is around $4,000.00. So if you want the possibility of a whopping 80% effectiveness and you're not well off, you'll have to sell organs on the black market to afford it. Esketamine is only around 40%effective. Why would they even put that on the market?!
If anybody knows where to send a letter to so I can get some answers or maybe just start a petition to make them push it through, that'd be awesome.

I’m frustrated. Bear with me. Here’s the deal. I’ve had chronic Lyme disease for over eleven years, since I was a child. I had symptoms for years and not a single doctor believed me or helped me until 2018, when I finally landed a diagnosis for not only Lyme, but also the co-infections babesia, anaplasma, erlichia, and bartonella. Long story short it’s been a long and difficult journey.

Recently, within the past few months, I’ve gone downhill pretty rapidly. I have a great new doctor, a Lyme-Literate specialist, who’s treating me to the best of her ability and is in constant contact with me. My worsening symptoms began with a hospitalization for viral meningitis, and then things like nausea, vomiting, weakness, appetite loss, joint pain, shortness of breath, tachycardia, low blood pressure, etc. I’ve been to the ER six times in 2019 for ***extremely severe*** headaches alone. Every damn time, the second I mention Lyme, the doctors stop taking me seriously and refuse to treat me, saying that it’s NOT REAL, when I have blood labs and symptoms to prove it.

Yesterday, I woke up unable to use my legs. If I try to walk, they shake violently and I buckle at the knee. The extreme weakness is coupled with hip and knee pain, numbness in some areas, and tingling. I saw my specialist in the afternoon and she said I needed to go to the ER (again) to rule out anything life-threatening, even though she strongly believes this is because the Lyme/babesia has rapidly progressed into my nervous system, causing weakness, active tremors, and possible partial paralysis.

Of course I was hesitant to come to the ER again, but at least this time, my symptom is tangible and obvious. But guess what - the doctor came traipsing in, totally cocky, and told me my labs are all negative and he thinks I should just go home because I’m making this shit up. The thing is... I. Can’t. Stand. Up. Let alone walk. At all. I had to demand a new doctor, and per my specialist’s advice, demand to see a neurologist, have them rule out every option, refer me to a physical therapist, and fit me for a wheelchair. They’re also denying me pain meds I’ve been prescribed to use to prevent my killer headaches. I just can’t believe I’m encountering such extreme dismissive behavior - but at the same time I’m not surprised.

Has anyone else experienced this??? HELP ME