posted
hi, not diagnosed yet but just curious about something. do neurological symptoms occur early in the course of lyme? i'm guessing if i do have this, (i have found a few ticks) it's been about six weeks give or take and i've had weakness, numbness, vibrations, burning, stiff shoulder arm, twitches, vertigo, blurred vision, yada, yada.
would i already exhibit neurological symptoms so soon. and if this was related to lyme wouldn't my sed rate be elevated? i'm awaiting my second test, mri of head and spine scheduled for next week but now i'm wondering if it's a spinal tumor or worse. neurologist does not think it's ms or worse since my symptoms come and go and they still do. i would think they we be constant if it was tumor (spine/brain) god, aren't i the optimist.
thanks karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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posted
You have a good question. I've had lyme for a very very long time and I never thought I had neuro problems. They really didn't get to the point where I noticed something was wrong until about two years ago. Now that I know I have lyme I can look back and see that I had small neuro issues years and years ago.
I believe that each person is different so it is probably very difficult to answer your question.
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
Karen YOur symptoms are almost mine verbatim, except I have more profound weakness on my right arm/leg.
I have seen tons of neurologists and had many tests, and nothing shows up as the cause.
my doc now thinks I have dysautonomia, which can cause many of the symptoms that you are describing also. May want to mention that to him.
Posts: 331 | From virginia | Registered: Nov 2005
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posted
Welcome to LymeNet!!! Many friendly helpful people here. Ask all the questions you need to.
Everyone is different. Hubby's main symptoms are neurological and G.I. -- both groups of symptoms showed up at the same time and have become progressively worse over time -- 5 years now since illness started.
MRI changes from Lyme usually do not show up for a year or two unless you have severe encephalitis or meningitis. Changes on SPECT scans probably show up sooner -- hubby has not had one of those.
The neuro symptoms you are describing, unless they are very severe, will not cause you to fail a routine bedside neuro exam. 6 weeks into your illness it is also doubtful that the bacteria have had time to do extensive nerve damage and most likely tests like EMG and nerve conduction studies would be normal as well.
My advice is to get to an LLMD now while you have a very good chance to beat this illness. The longer you wait the more likely you will need more costly and lengthier treatment.
The other issue is coinfections. Ticks almost always give you more than one infection and frequently each infection requires a different treatment protocol. Only an LLMD has the experience to diagnose these coinfections and treat them adequately.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hello firepipernurse,
I got bit & developed a rash June 22. I had several mild neuro symptoms within one week. It's been 4 weeks since then. I've been on antibiotics (augmentin and biaxin xl) and flagyl.
I'm feeling much better, but am still not 100%.
I noticed a dramatic loss in typing and spelling skills; I missed many spelling errors while proofreading. I felt like a slug mentally and physically. I would use the wrong word in a sentence & just couldn't think as quickly. I had difficulty understanding new material.
Get treated by a LLMD. It makes a world of difference!
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Karen~ My symptoms were initially neurological: dizzyness, burning nerves, brain fog, tingling nerves.
My neurological exams (by 5 neurologists) have all been normal, including a spinal tap. Brain MRI also normal. Brain SPECT consistent with lyme.
It's good to get an MRI, and it's good to rule out anything else that the neurologists can think of, but don't let them label you with "idiopathic peripheral neuropathy" until you've visited an LLMD.
I'd make an appt now for your nearest LLMD (see Seeking a Doctor here at lymenet); while you continue to rule out other causes of your illness.
Good luck....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Hi Karen, What you describe is exactly what happened to me.. I went to the doc. complaining of fatigue and I told him that I thought maybe I had mono again. Ran a mono-spot, nothing. Ran everything else in the world, MRI's CT's and SPEC scans. Nothing, not saying that you shouldn't have them done to rule things out..I remember my brain fazing in and out and then it just completely fazed out 24/7 and have been that way since 1999. I just got dx'd for lyme 3 months ago and am beginning to see a little bit of improvement on abx. Sure wish i could go back and start over..Get a good LLMD and get tested..Good luck.. Clay
Posts: 9 | From Nebraska | Registered: Jun 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Borrelia burgdorferi (the bacteria that cause lyme disease) can enter your brain very quickly and wreak havoc.
DO get all your neuro tests done for peace of mind and to rule out other problems. However, they'll likely be negative. But don't let that make you think you DON'T have lyme disease. Given your tick bite history, you quite likely DO. Please find an LLMD and get proper testing and treatment! Your neurologist will not test you properly, it's guaranteed.
Here's an excerpt from an article by Tom Grier, a brilliant researcher/microbiologist, entitled "The Complexities of Lyme Disease". ------------------------------------- What happens when the infection gets to the brain? In the case of Lyme disease, every animal model to date shows that the Lyme spirochete can go from the site of the bite to the brain in just a few days. (41,60, abstract 644) While we know these bacteria can break down individual cell membranes and capillaries, its entrance into the brain is too pronounced for such a localized effect. When the Lyme bacteria enters the human body, we react by producing several immune regulatory substances known as cytokines and lymphokines.
Several of these act in concert to break down the blood brain barrier. (E.g. Il-6, Tumor Necrosis Factor-alpha, Il-1, Transforming Growth Factor-beta etc.) In addition to affecting the blood brain barrier, these cytokines can make us feel ill, and give us fevers. (54,60,) (JID 1996:173, Jan)
Since the brain has no immune system, it prevents infection by limiting what can enter the brain. The capillary bed that surrounds the brain is so tight that not even white blood cells are allowed to enter. Many drugs can't enter either, making treatment of the brain especially hard.
For the first ten days of a Lyme infection, the blood brain barrier is virtually nonexistent. This not only allows the Lyme bacteria to get in, but also immune cells that can cause inflammation of the brain. (41) *Note: The breakdown of Bb was shown to occur by tagging WBCs, albumin, and other substances known not to cross the BBB with radioactive Iodine.
The CSF was tested, and then the animals were infected with Bb. Then the CSF was tested everyday for several weeks. The result: No cross over of Iodine in the control group, 100% crossover in the infected group for 10 days. The infection had the same result as injecting the radioactive iodine directly into the brain. (60)
When the human brain becomes inflamed, cells called macrophages respond by releasing a neuro-toxin called quinolinic acid. This toxin is also elevated in Parkinson's Disease, MS, ALS, and is responsible for the dementia that occurs in AIDS patients. What quinolinic acid does is stimulate neurons to repeatedly depolarize.
This eventually causes the neurons to demyelinate and die. People with elevated quinolinic acid have short-term memory problems. (27,29-37,40-42,74,75, 82-84,87-90)
This means: If we think of all of our brain cells like telephone lines, we can visualize the problem. If all of the lines coming in are busy, we can't learn anything. If all of the lines going out are busy, we can't recall any memories. Our thinking process becomes impaired.
A second impairment to clear thinking that Lymies experience is the restriction of proper circulation within the blood vessels inside the brain. Using an instrument called the Single Photon Emission Computer Tomography scanner (SPECT scans), we are able to visualize the blood flow throughout the human brain in 3-D detail.
What was seen in the brains of chronic neurological Lyme patients was an abnormal "swiss-cheese" pattern of blood flow. The cortical, or thinking region of the brain, was being deprived of good circulation; the occipital (eyesight) regions had an increase flow. This could help explain why most Lyme patients complain of poor concentration and overly sensitive eyes. (91)
The full text of his brilliant article can be found at:
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