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» LymeNet Flash » Questions and Discussion » Medical Questions » 8 months of non stop symptoms :( neuro lyme

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Author Topic: 8 months of non stop symptoms :( neuro lyme
WishIwasnormal
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Hello everyone my names parker i have had symptoms for 8 months since around valentines day and wanted some opinions of some with neuro lyme.

In february it was a normal day at work busting my ass as a mechanic and then i got weak and dizzy like i needed food REALLY BAD. I got lunch yet i still felt dizzy and nauseous and overall like i had the flu.

I went home fell asleep and woke up never feeling normal for 1 moment for 8 months. My symptoms are as follows...light headedness constantly, brain fog constantly, slight dizziness constantly, overall feeling slightly drunk and woozy constantly, short term memory loss, basically feeling high or drunk constantly.

Just recently i had started to get pressure in my forhead and on the bridge of my nose like a tumor was behind my forhead and growing. At first the pressure came and went 15 times a day till after 4 weeks now its present 9/10 days through the entire day.

I have had thorough blood work, a negative lyme blood test, an MRI no contrast and a CT scan. Everything checking out.

My parents and doctor feel i am making this up and i just need to "move on" however its hard to live on a daily basis like this and i had to leave my career as an auto mechanic because of the memory loss and dizzyness...

does this sound like neuro lyme? I am getting a brain eeg done in a week but after that my doctor has no real plan of action. Someone please help. Thank you... [Frown]

[ 09-11-2013, 01:57 PM: Message edited by: Lymetoo ]

Posts: 12 | From Orange county, california | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
WishIwasnormal
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Perhaps a mod can move this post to the medical question forum...
Posts: 12 | From Orange county, california | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
BoxerMom
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Those are Babesia symptoms. It is another tick-borne infection.

A very bad strain, Babesia duncani, is endemic to CA.

You need treatment ASAP. Your doc won't believe a word of this. Testing through the common labs is hit or miss. They are just not set up to find tick-borne infections. We use specialty labs.

Post in Seeking a Doctor and make an appt for as soon as you can.

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 - Must...find...BRAIN!!!

Posts: 2867 | From Pacific NW | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
WishIwasnormal
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Do you have any more info on that particular babesia duncani virus? Yes i just moved to california about 8 months before infection and would periodically go to the woods with friends so perhaps you are correct ;(
Posts: 12 | From Orange county, california | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
WishIwasnormal
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I know my "lyme disease" bloodwork was out sourced and i never got a report nor any information from my neurologist on this test result besides "lyme test was normal" how can i obtain these results and is it possible i wasnt tested for that babesia duncani infection?
Posts: 12 | From Orange county, california | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Moving to Medical Questions

--------------------
--Lymetutu--
Opinions, not medical advice!

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BoxerMom
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It's a protozoan. A piroplasm, like Malaria.

This description is OK, but not nearly comprehensive.

https://sites.google.com/site/marylandlyme/tick-borne-diseases/babesia

We have a comprehensive list of symptoms in a thread here, but the search function is down.

I will eat ten hats if you were tested for B.duncani. Physicians pretty much tell us we are making up our symptoms then watch us become increasingly disabled. They like to tell us we are depressed.

Your only prayer of diagnosis and treatment is to see a Lyme specialist. Post in Seeking for an LLMD in your area.

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 - Must...find...BRAIN!!!

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BoxerMom
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Watch Under Our Skin on Netflix or Hulu. It's a great documentary that illustrates why doctors can't/don't diagnose Lyme and co-infections.

It follows several patient stories. Jordan Fisher Smith was a Forest Ranger in CA when he was exposed.

Don't worry. It's not boring at all. It's a great film.

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 - Must...find...BRAIN!!!

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WishIwasnormal
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I have definitely gotten the idea my doctors dont really take lyme serious at all. Do you think i was just tested for basic lyme and i just didnt have it? I dont understand how i could be infected with a co infection but not typical lyme (i forget the most common name) or is it possible i just tested false neg so they didnt test for anything else?
Posts: 12 | From Orange county, california | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
Shiela
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Most likely you were tested with the standard faulty test. The Western Blot test is less than 50% accurate. That means you may as well toss a coin. The Western Blot was designed from only one strain of Lyme. There are 100 strains recognized in this country and 300 worldwide. And the Western Blot does not test for coinfections.

It's difficult to sort this out while you're not feeling well and at having to fend off relatives and doctors who don't believe you.

Don't give up. This is a great support group. We have been / are where you are.

I have neurological Lyme also and have the same symptoms as you. I saw 45+ doctors and couldn't get a diagnosis. Finally saw a Lyme specialist who used a different test and immediately got a diagnosis when he saw the test. He put me on antibiotics at the very first visit.

.

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I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

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Shiela
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To answer your question about getting the test, or any other that you've had done--

If your doctor is associated with a hospital, you can call the hospital's Medical Records department and request a copy. There may be a small copy charge and you may have to sign for it in person. If your doctor is not associated with a hospital, ask for them directly from the doctor. It's the law that you can get copies.

--------------------
I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

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WishIwasnormal
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Well i posted in the seeking a doctor forum i hope i can find one soon and make an appointment ASAP. You have simal symptoms as mine also? The only other symptom i have had was only a few times i got virtigo in the shower when eyes closed and then a couple times before falling asleep i thought there was a tiny earthquake cuz i felt the room moving. ALSO th very last time i went to the doctors i had a random fever of 100 for no reason and i felt completely "normal" it makes me wonder if i should periodically take my teperature to see any random fevers...
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WishIwasnormal
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Also has anyone had coffee increase the neuro problems? Today i had coffee for the forst time i. A LONG time and today has been my worst day in a while...
Posts: 12 | From Orange county, california | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
BoxerMom
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Yes, you will have multiple tick-borne infections in your mix. Lyme, Babesia, bartonella at the least.

This is a very complicated illness, but you can recover. Be smart about picking doctors. Learn everything you can (over time). Try not to let the clueless and arrogant doctors get you down.

Have your family watch Under Our Skin. Honestly, it's easier than trying to explain anything to them.

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 - Must...find...BRAIN!!!

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BoxerMom
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Classic Babs. We call it rocking on a boat. Sometimes it feels like stepping off a cloud.

The neuro symptoms are weird and soooo debilitating.

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 - Must...find...BRAIN!!!

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munchin
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I have the exact symptoms and you describe it perfectly. You mentioned coffee making you feel worse.

When I first got sick I was convinced that it was the coffee. I thought the company suddenly changed the recipe adding some sinister new ingredient that was slowly positioning me.

After all, the many docs I saw said there was nothing wrong with me.

I found this site and with the help of everyone here I was pointed in the right direction.

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WishIwasnormal
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Hopefully i can find a doctor to help me....i do wonder why i havent developed anymore symptoms besides the ones i listed and as to how it hit me mid day one evening and has not gotten any worse except for the headaches and head pressure after 8 months...i feel like i shiuld be getting horribly worse...
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steve1906
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You may get sicker, you may not. When it comes to Lyme disease we're all different.

You started with the classic symptom (Flu like symptom)> is very, very common. It was my first sign also, then I had 24 more symptoms within a month.

I found this online for Orange County, CA - Check it out>

Orange County Integrative Medical Center
Understanding Lyme disease and Co- Infections

http://ocimc.com/images/New%20Patient%20Packet%20-%20Lyme%20Disease.pdf

Also make sure you read this>

http://www.lymenet.org/BurrGuide200810.pdf

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Everything I say is just my opinion!

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Limeaid
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You didn't mention anything about a tick in your

post, or why you think you have Lyme or even

neuro Lyme. So the symptoms you are describing

could represent so many different

illnesses. Can you give us more information?

Posts: 84 | From Seattle, WA | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
   

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