I am not dx with anything at this point. I have tested positive for EBV (not the active virus but the other titers were high) I had a lymes test, and it was negative. (Igg P41 Ab. was present, as was IgM P41Ab.) Anyway, I saw a neuro who ordered an EEG, cervical and brain MRI. The eeg and the cervical mri came back normal but the brain mri says:
Mild multiple surpatentorial focal white matter signal abnormalities, nonspecific. Differential considerations would be Demyelinating process (MS), vasculitis, migraine syndrome, lyme disease or other leukoencephalopathy.
I am a 40 year old woman. I have no history of high blood pressure. I have had a couple migraines in my past, but I can count on my one hand how many times that happened. Current symptoms are extreme fatigue, lightheadedness, ringing in ears, migrating joint pain, numbness and tingling in hands and feet occasionally. Also headaches.
My neuro is sending me for another LYMES test, to the same lab that did the last one, so I don't expect different results.
Has anyone who has a definitive diagnosis had these symptoms and an abnormal brain MRI?
Thanks for any input.
Posts: 5 | From Toms River, NJ | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
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- First, Welcome. But so sorry for your having to be here. So, tighten your seatbelt for a crash course in Lyme Disease. With apologies for content. I'd rather be teaching singing or swimming.
** What is the other test ordered? What lab ? When?
--------------
Lyme can CAUSE every one of the differential diagnoses. Often, MS is misdiagnosed when lyme is the underlying connection. Cpn, too, is often involved with MS. More about that later.
Demyelinating process (MS), vasculitis, migraine syndrome . . .
[Google: leukoencephalopathy, borrelia]
Ringing in the ears (tinnitus), and all your other symptoms are classic lyme but could be other chronic "stealth" infections, separately, or in a mix. A good LLMD can distinguish.
Even EBV can be misinterpreted as dormant when it might be chronic persistent. But the fact that you have two positives on the Western Blot (even if CDC negative) puts lyme at the forefront of suspicion.
------
Just curious. How did you first hear the name of this? Did your neurologist use the term "lymes" with an "s"? Why I ask is that, any doctor who has really studied LYME, would never add the "s" - except, sometimes if it was an accent or just an occasional slurring of speech.
Regardless, Find a LLMD (Lyme Literate MD).
That you have such symptoms, with MRI results and one positive band each on IgG and IgM Western Blot test points to lyme -- just not by the CDC definition which is set at such criteria as is eliminates many with active and chronic persistent lyme. It's a political thing with the insurance companies pressuring the CDC and IDSA to discount lyme so insurance companies don't have to cover treatment.
The documentary "Under Our Skin" details this. Link below.
IDSA explained in the "Controversy" article in the set of links, post to follow.
Most doctors do not understand why when most labs do only partial testing that it should matter.
Now, since you had the Western Blot, my guess is that the neurologist has order a lumbar puncture for you. .
AVOID LUMBAR PUNCTURE (spinal tap). Most regular MDs think this is necessary. Most often, a negative result is used to deny treatment.
It's an extremely ineffective test for lyme, expensive, often painful and can cause debilitating migraine and weakness for weeks afterward, so much so that you may need personal care for even the most basic task.
================
Why AVOID LUMBAR PUNCTURE (spinal tap) ? For reference links, scroll 1/3 of the way down:
[ 06-15-2010, 08:17 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- AVOID STEROIDS. If offered any Rx of steroids, AVOID STEROIDS (unless a life-threatening situation or to save eyesight, etc.). Then, if used, there are specific procedures with antibiotics (abx) to offset problems.
Do you recall any tick bites, attachments, rashes, "flu" symptoms soon after a tick bite or a couple weeks later ? Not everyone with lyme remembers a bite or even has a rash. But history of a rash can certainly be helpful with diagnostics.
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
===========================
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. But the bottom line is that lyme is a clinical diagnosis. No test can say if a person does not have lyme.
========================
About the WESTERN BLOT
Dr C's Western Blot explanation is discussed here. VERY important to read full post by going to the link:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
==========================
This explains WHY you need an ILADS doctor for proper assessment:
Now, don't be frightened off by the title "Cure Unknown" - The author (and many others) have achieved good remission and you can, too. Yes, lyme can be very serious, indeed. And some don't make it. I don't want to scare you but it needs to be said so that it can be approached with extreme respect.
All this is a bumpy ride, I know. However, the right doctor and a good clinical evaluation can set you on the path to regain health.
Many who are faced with chronic "stealth" infections such as Lyme, etc., do see success. It is possible.
Also be sure to take frequent breaks and rests. Laugh where and whenever you can. All this is serious but I hope you can have some humor & beauty in your life to offset this. Take care. -
[ 06-15-2010, 08:12 PM: Message edited by: Keebler ]
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Keebler
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[ 06-15-2010, 07:04 PM: Message edited by: Keebler ]
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Keebler
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posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Cpn Help - a fabulous learning and resource site. Similar in some ways to lyme (although not a spirochetal infection), Cpn has also been researched as one cause of MS.
[ 06-15-2010, 07:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Sorry for so much all at once. I hope you will save these sets to your personal work file. A couple other important keys:
Avoid ASPARTAME, even just a trace. It's very toxic to the brain. Check all your labels, even mints, gum, cough drops, and liquid or powdered medicines.
Also avoid MSG. It's also neurotoxic. Google for all the names both of those hide under. Manufacturers don't want you to know.
Topic: Warning about aspartame.... being marketed as NATURAL!
====================
STEVIA - from plants is okay, in moderation. Just be sure you get a brand with no added junk. SweetLeaf is a good brand. So is Trader's Joe's Stevia extract.
In general, avoid all processed foods, additives, dyes, etc. Your body has enough to deal with already and needs all the help you can give it.
Take care. -
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Keebler
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Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I have a similiar MRI reading such as yourself. I was positive for Babesiosis thru Quest, but negative for Lyme thru them twice. I tested thru Igenex and had bands 31 and 41 positive. The band 31 sort of clinched it for me, and of course, I had the positive Babesia test.
Your symptoms sound too much like Lyme and I suggest you get tested elsewhere. If you don't want to go thru Igenex, try Stonybrook or MDL, as I believe they will test for all bands on the Western Blot.
Posts: 157 | From connecticut | Registered: Feb 2007
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posted
Thanks for all the information and links. I will certainly be doing much reading in the next few days!
I am embarrassed to say, but I honestly don't remember if my neurologist said "lymes" or "lyme". I think I just refer to it as "lymes". My memory is not the greatest.
Do you think it would be a good idea to call my neuro and let him know when I had the lyme test in March those 2 bands were positive? I didn't tell him at the last appointment. I was busy taking in everything he was saying about my brain MRI and couldn't think of any questions to ask at the time.
I am going to start a journal. I need to take notes so I can remember things to ask my doctor.
Posts: 5 | From Toms River, NJ | Registered: Jun 2010
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posted
Oh, and no rashes (that I remember). I do have very fair and sensitive skin, so a rash could very easily have been just brushed aside as a reaction to scratching, clothing, etc.
The lab is labcorp.
Posts: 5 | From Toms River, NJ | Registered: Jun 2010
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dmc
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posted
Do NOT do a spinal tap...do a search here regarding spinals. They are nearly worthless for lyme diagnosis.
Just get to a Lyme Literate doctor.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
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- Find out HOW the ACE test is to be performed. In a basic search, I found that it seems to be drawn from the hand or arm. But I also found a reference to it with a Lumbar Puncture (Spinal Tap).
To reiterate: AVOID spinal tap.
Look on the referral page and call the lab doing this to see if it will be from a vein in your hand or arm.
=====================
This was a reference that concerns me: "spinal fluid angiotensin converting enzyme (ACE) level" but the link at Google led nowhere.
. . . ACE levels is a blood test that measures the amount of angiotensin-converting enzyme (ACE). . . .
. . . Blood is typically drawn from a vein, usually from the inside of the elbow or the back of the hand. . . .
. . . ACE levels can be used in the evaluation of sarcoidosis and some other diseases. People with sarcoidosis may have their ACE levels tested regularly to check the severity of the disease and to monitor the response to therapy. This test also helps confirm Gaucher's disease and leprosy. . . .
. . . Increased ACE levels may be a sign of sarcoidosis. However, increased ACE levels may also be seen in several other disorders, including: [ see list ] . . . .
. . . Because elevated ACE levels may also be seen in several other disorders, the overall usefulness of the ACE blood test is limited. . . .
. . . Also called: Serum angiotensin-converting enzyme; SACE
- full page at link above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- there are still questions about the other tests but I'm pretty much toast right now, so I'll let others field that.
As for if you should send your neurologist copies of your lyme tests, you can mail a copy to him. No need for a appt. He would not be the kind of doctor to treat you, in any case.
Note, though, that if your lyme test is CDC negative, you would never, ever be taken seriously if a better test show positive. Once a negative lyme test is in one's file, it's a closed matter. -
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