lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Got back late last night. Too sick to write much. Diagnosed with enterovirus causing meningoencephalitis.
ER doc said Lyme symptoms get worse in people who get a viral infection in the central nervous system on top of the Lyme disease.
I was pleasantly surprised that he was knowledgeable.
I was admitted and the neurologist asked my sister about any abuse, how's the relationship with hubby, etc. She gave him a piece of her mind. She's a Lyme patient, too, so she gave him a good education.
Still, he came into my room and told me the good news is that the only problem I have is stress. Wow, does it ever end? Even when a spinal tap revealed an elevated white blood cell count.
My sister got him to agree to not write anything about a "psychosomatic illness" in my medical records. Thanks, sis, for being my advocate when I was so out of it.
The reason he thought it was due to stress is because an eeg didn't reveal seizures during times when I was confused, slurring my words, and babbling nonsense.
OK, so I don't have epilepsy. So why do these quacks have to fall back on psychosomatic disorder? Why is that ALWAYS the default diagnosis? Doctors like that are lazy scumbags.
Get this - the neurologist has Lyme disease himself! He was treated for two weeks and continues to have joint pain. And yet, he is still an IDSA duck! I guess he just doesn't have Lyme badly enough - gee whiz!
Well, I'm utterly exhausted now and will have to sign off. Bye for now, Lyme family.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Julie,
so sorry to hear all of this. Although it is a virus, did they actually treat you or just call it stress.
Enterovirus causing meningoencephalitis can be very serious. I would have suggested IV garlic, actually. There are some naturopathic doctors who use it that way for encephalitis.
I'm shocked that he said stress was the main problem. But, so - did he do anything to help your adrenals to better handle that ?
Stress - although they so grossly toss off as a character flaw - is far more complex and it just burns me that if they think stress plays any part that they ignore adrenal support that is so very vital to recovery.
Stress needs to be called by its real name: adrenal dysfunction, secondary to infection (in this case).
Yikes. I hope you can steer clear of doctors who don't see the full page. You may want to get a copy of your medical record from that visit. He may not have kept his promise. You need to be sure.
Best of luck as you recover (on all levels) from this latest experience. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Very sorry to hear this. Thank goodness for your sister!!!
Doctors keep holding onto this notion that ALL symptoms should show up on a TEST somewhere. How stupid is that??
Get well soon!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymeboy
Unregistered
posted
I had a very similar situation 2 months ago. I had a 105 fever, was having a hard time breathing, and I didnt want an IV, or steroids. They treated me like $h!+. Doctor said that my fever stressed me out and that was why I couldnt breathe right. Wrote me off as Psychosomatic. Really made me mad. Since then I avoid talking to anyone about Lyme. Many people are of the mind that if they can't see it, or it never happened to them, it just doesn't exist. More people than I could even fathom before I started dealing with Lyme. Sorry to hear about that. Good luck in healing.
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
The ER is not fun. I was just thinking back to my last ER experience. what a nightmare. I often think if I got through that I can get through anything.
Hang in there.
I have been encouraged that doctors have been listening to me when I tell them there have been many new cases of Lyme in Southern Ca. Most docs say "oh, that's just an East coast thing." I tell docs in my area - if you have any mystery patients where no one knows what's wrong with the patient consider Lyme.
These are some symptoms .....
Posts: 2232 | From USA | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think they have been enlisted in the IDSA Duck of the year contest...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Oh gosh, I didn't even realize you had gone to the ER. Better you went though because you have been so sick.
The ER doc sounds like a gem. Too bad the neuro was such an a$$.
Relationship with your husband??? Stress??? Abuse??? My God. Really where does it end? Apparently a$$holes are in abundant supply and all too willing to offer up a bunch of BS.
The "I-don't-know-what's-wrong-with-you-but-it- can't-be-anything-serious-so-it-must-be-stress" syndrome still persists among medical professionals.
I think this is a disorder that needs to be treated by a mental health professional. I might just start handing out cards from local therapists if/when I encounter this line of thinking.
And this neurologist that saw you for what, two and a half minutes? must be brilliant (legend-in-his-own-mind type of guy I'm guessing).
A negative EEG DOES NOT rule out seizures (been told that by 2 top neuros).
Sorry you have been through such an ordeal. Hope you are feeling better soon.
Kudos to your sister for standing up for you.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Could it be you were delerious (sp?) from a fever that went along with this infection? That would make you babble and be incoherent.
Hubby had 105 degree fever when he first fell ill, he was delerious, disoriented and out of it for days from the fever. The high fever and infection caused brain injury which he will never recover from.
Oh yeah, and I have Munchausens by proxy because I am making my husband sick. HELLO?
Will it ever end.
I hope you have a speedy recovery now that you are home again.
Posts: 252 | From USA | Registered: Sep 2003
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi All - Wizard, I was delirious but I had absolutely no fever. It's very hard for me to ever have a fever even when I feel like I MUST have a fever because I feel so crappy.
I'm doing some better now. I can get out of bed and sit up for longer periods. I had one episode this afternoon in which I felt like a knife blade slashed through the back of my brain and then I went into a confused, babbling stupor for a few minutes.
This particular symptom has been with me on and off for more than a year now, and worsened considerably when I got the virus. I don't trust myself to drive or go out alone at this time.
Take care, All. Getting tired so I'm going to sign off.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Hi Lymelady I am so very sorry for all your going through. I have yet to see an LLMD and have been suffering strange things for over a year now. All the doctors say is you have menieres disease and arthritis but we can do no more for you. I took two ticks out in the last three years when I cut lawn upstate NY and they tested postive yet my GP never treated me cause the lyme titer was negative? I have what feels like shocks going through my head and I tip over..even sitting..always dizzy and cannot walk drive or work for the last 5 months. I forget names? Was beginning to think i had dementia!!! anything sound like what you are suffering from. Are you being treated with IV therapy that everyone is telling me about..thanx for your help Ann/Brooklyn
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Ann, no, I'm not being treated with IV therapy at this time but I'm beginning to wonder if I shouldn't be on it. I've done IV in the past with mixed results. However, three years ago I was hospitalized with meningitis and was given IV. I know one of the antibiotics was doxycycline but I can't just now remember the other two. Anyway, after I recovered I no longer was dependent on a wheelchair. To this day I only rarely need my wheelchair, when before it was an 80% of the time need.
There are many knowledgeable people here on Lymenet and all will tell you to get thee to a Lyme-literate physician with your symptoms and history. The tests for Lyme disease cannot be depended on, but unfortunately many doctors either don't know this or pretend to not know this.
Lyme is a clinical diagnosis, and more likely than not you will be co-infected with other pathogens.
This site is a great resource. It sounds like your life has been turned upside down. I really hope you can get a knowledgeable specialist and turn this around. Believe it or not, I am much better today than I was for the first four years of my illness. I have been very ill for nearly 8 years. A good doctor who will fix you up with a protocol tailored to your needs will likely help you very much.
Best wishes for recovery - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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