lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Oh, guys, where do I start?
I have not been doing well lately at all. I keep having "drop seizures" - not true seizures but my eyes roll back in my head and I either fall down or catch myself in the middle of a fall. This sometimes happens many times throughout the day.
I've been dizzy and feel so sick, too. My head pounds, I'm nauseous, and I'm weak as a kitten.
Anyway, I went grocery shopping on Friday because we were out of everything. I felt lousy so I slowly made my way around the aisles. My mouth was quivering I felt so weak.
I got up to the checkout and put the last item on the conveyor and BOOM!, down I fall. I tried to get up but fell again. I then started tremoring and shaking and could not speak or open my eyes.
Of course, I was sent to the hospital. I couldn't respond to the EMTs. I didn't want to go because I get treated so horribly at the local hospital. They decided to admit me to the neuro lab and I was taken upstairs.
The attending physician must have looked through my medical records before seeing me. He was extremely skeptical that I was ill at all because my records say I'm a nutcase.
As I lay in my hospital bed, my face started to droop. I looked in the mirror and noted that Bell's palsy was looking back. I thought to myself, "Well, the doctor can't miss this nasty little symptom."
Hmmph. The palsy didn't concern him at all. My blood pressure of 80-something/40-something didn't bother him, either. The fact that I had to write him notes and couldn't get out of bed to get to the toilet was of no importance.
I had one episode of "freezing up". I was conscious but couldn't respond to questions. It looked like I was sleeping. This great guy thought I was pretending so he started pinching me really hard between my fingers.
Then he said, "I'm going to have to do a spinal tap on you if you don't stop doing this, Julie. You wouldn't like that, would you?" All I could do was groan.
When he came in to send me home later he said I'd been in the hospital numerous times and what did I think I was hoping to accomplish this time? He said there was nothing wrong with me.
I just couldn't wait for my husband to come and get me. I felt like a sheep in a wolf den. I felt humiliated and upset. And still, very, very ill.
I don't know why, but it still shocks me when doctors take this attitude toward me. It takes me several days to recover from the insults.
I just don't know why I've gone downhill so much. I'm doing ceftin, biaxin/plaquenil, and levaquin right now, but I've been doing them for quite awhile. It seems my downturn has been relatively sudden. It doesn't feel herxy.
I feel like I'm dying. I know it sounds cliche, but I really, really do. Anxiety and depression are starting to take hold.
I guess this little story isn't really going anywhere, but I know I can tell you guys everything and you'll understand like no one else. Thanks for letting me let it out.
- Julie Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Julie, I am so very sorry that you had this experience. I read about these over and over again, and it just breaks my heart. All I can tell you is that you are in my prayers. I wish you well and healing.
Posts: 117 | From Illinois | Registered: Apr 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hugs for you Julie!!
Oh, I'm so sorry!!! So very very sorry! I'm an RN and I saw supposed medical 'professionals' behaving badly toward patients. Doctors can be so pompus and arrogant as you well know.
I hope that you are able to receive some help. Do you have an LLMD? Or a Lyme pysch who can validate any mental issues as being due to Lyme? I was suicidally depressed in the first 2 years after I got sick and if I'd gone to a shrink, they would have just said I was depressed. I went to the Er for a panic attack on Fri, which they diagnosed me as having a panic attack and gave me a sheet on it.
Also, in MY opinion, it would not hurt to report this physician to the hospital AND the state medical board! Saying that he would have to do a spinal tap IF you don't stop and that YOU wouldn't like it would you, IS ABUSE!! That is a threat. If he'd said it differently, like, "I may have to do a spinal tap based on your symtpoms, unless they resolve." But no, he threatened you.
And he isn't going to learn otherwise unless he feels the heat from somewhere!
I had a surgeon tell me that it was my fault that they didn't do emergency surgery on me for my appendix. He said since I wasn't screaming or crying, they didn't think it was serious. When I had a fever of 104.5 and was panting due to a rigid abdomen (classic symptom of appendix that has burst), well I didn't cry or scream when I delivered my kids either, didn't know it was mandatory
If you are too weak to report him, your husband could start. Who cares if a mental patient WAS making it up, they have no right to treat anyone like that.
You and hubby must have the same bugs. I posted a thread about his recent ER visit a couple of days ago. So many similarities in symptoms except hubby couldn't even write.
I know it is a last resort, but you might want to mention hydrocortisone to your LLMD.
Will let you know if hubby's LLMD has any other ideas after his appointment.
Hang in there. There has to be an answer somewhere.
You might also check out the thread I am posting on Brain Music. Hubby is definitely interested in this, but it depends on how much other medical tests cost as to whether we can do this.
Hubby was also wondering if it is possible you might have cold agglutins. Especially of concern since the weather has changed.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
julie,
i'm so sorry what happened and the DISRESPECT shown to you; so tired ; logging off. best wishes!
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
We expect doctors to be more ethical, more honest, more capable, more responsible, more "whole" than the rest of the population, but they're not.
He isn't capable of handling your mysterious illness, the problems that he can't fix. So he's blaming you.
This is a common human trait, if a deplorable one, to blame the other person for what you feel are your own failures or shortcomings. Its just lousy to see it in doctors.
I have a doctor I am appalled by. This doctor's ethics are in the toilet. I try not to go there very often.
Posts: 2276 | From united states | Registered: Jun 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Lymelady,
That is awful. That they sent you home very ill is awful.
I cannot imagine having to go through that.
You are one tough lady to push on as you do. With symptoms like yours, I would not have the courage to venture out to the store.
Your efforts are heroic. How anyone could say that you are making this all up is beyond me.
It makes me so angry. Not only are we sick, but we also have to suffer abuse.
What is your LLMD saying about your recent slide?
The more I think about this awful disease, the angrier I become. There is no way that this crap could have naturally occurred in nature, just no way.
I will think of you in my prayers julie.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Peacesoul
Unregistered
posted
Hi Julie, sorry you have to go through all this.
What did your LLMD say about this last incident? Do you advise these dr's in the hospital you have lyme?
you say "I just don't know why I've gone downhill so much. I'm doing ceftin, biaxin/plaquenil, and levaquin right now, but I've been doing them for quite awhile. It seems my downturn has been relatively sudden. It doesn't feel herxy"
maybe it's time to look at an alternative treatment. Just a thought
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi, everyone. Thanks for all your kind thoughts and advice.
I haven't yet told my LLMD about this latest turn of events because I will be seeing her very soon. I knew the "doctor" at the hospital wouldn't give her any respect so I didn't want to drag her into it.
I have come to the conclusion, on my own, that I probably have orthostatic hypotension to blame for some of my new symptoms. It doesn't explain everything, but it makes sense.
Ocean, that's a good idea to report Dr. Dingdong. He needs a good hand pinching!!
Feelfit, thanks for calling me "heroic". I try, I really, really try to give my kids as normal an existence as possible. And my dear husband has always been high strung and a worrywart so I hate that my condition puts such a strain on him. I always want to ease his burden so I end up doing too much.
Peacesoul, yes, I do tell the doctors at the hospital that I have Lyme. They don't believe me. The doctor on my case told me, "I did my residency in Connecticut. Lyme disease doesn't look like this." And yes, I do quite a few alternative treatments. Lots of supplements as well as rife and ozone therapy.
Thanks again for your thoughts and encouragement.
- Lymelady Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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