posted
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...
[ 09-11-2013, 01:57 PM: Message edited by: Lymetoo ]
Posts: 12 | From Orange county, california | Registered: Sep 2013
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posted
Perhaps a mod can move this post to the medical question forum...
Posts: 12 | From Orange county, california | Registered: Sep 2013
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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.
posted
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
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posted
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
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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.
posted
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
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posted
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.
.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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posted
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. Posts: 149 | From Maine | Registered: Oct 2010
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posted
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...
Posts: 12 | From Orange county, california | Registered: Sep 2013
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posted
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
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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.
posted
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.
Posts: 137 | From New england | Registered: Aug 2012
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posted
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...
Posts: 12 | From Orange county, california | Registered: Sep 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
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
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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