Topic: ATTENTION ALL LYME INDUCED MS PATIENTS. WE NEED YOUR HELP IN WASHINGTON-SAVE LIVES!
LostCityAgent
Unregistered
posted
OK, I am working with several young people with presumed MS here in WA state; as well as with myself. This is a poll for personal information to support our claims here at Lymenet. This poll is specific to Multiple Sclerosis and Lyme disease. Though this information is personal it can save lives. Please consider helping us out!
Education and pathology are our only assets to win this fight. I would like to show you and others how similar we are to MS on the MRI: This is my brain report. And, the POLL follows.
TECHNIQUE: Multiplanar T1, T2 weighted and FLAIR sequences were obtained prior to intravenous contrast. After intravenous Omniscan, T1 images were obtained.
FINDINGS: There is no MRI evidence of midline shift or mass effect. Multiple round to ovoid foci of increased T2 weighted signal are noted in the periventricular and deep white matter of both cerebral hemispheres. Some foci within the centrum semi-ovale are oriented perpendicular to the plane of the corpus callosum and cingulate gyrus, suspicious for MS plaques. More ill-defined increased T2 weighted signal is noted in the periventricular white matter. Faint nodular areas of increased T2 weighted signal are noted within the corpus callosum. A small, 3-4 mm ovoid focus of increased T2 weighted signal is seen within the posterior aspect of the left middle cerebellar peduncle. After IV contrast, at least five of the presumed plaques appear to enhance, the largest seen in the right frontal white matter, measuring 8 mm in maximum AP dimension. Normal signal void is demonstrated in the major vasculature at the base of the brain. Visualized paranasal sinuses appear clear.
IMPRESSION: Multiple round to ovoid foci of increased T2 weighted signal in the periventricular and deep white matter of both cerebral hemispheres, as well as within the left middle cerebellar peduncle and corpus callosum. Several lesions appear to enhance after IV contrast. Findings are non-specific, but are suspicious for MS plaques. Other etiologies, such as Vasculitis or Lyme disease, could produce similar findings. Clinical correlation advised.
POLL:
1. How many lesions do you have? 2. Where are your lesions located? 3. What is your largest lesion? 4. How long have you had lesions, been diagnosed with MS (prior)? 5. Have you ever taken MS drugs? 6. If so, what was the outcome? 7. How Long Have you not taken those drugs? 8. How long have you been on LD drugs? 9. Any significant improvement? 10. Was your LD test positive or negative? 11. Did you have the Bulls Eye Rash? 12. How long after the bite did the neurological presentation begin? 13. Has a neurologist agreed with LD over MS?
Thank you. If you take the time we can help prove our point to girls who did not have a chance like Gwen.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, John.
Good on you for making an effort to help others. Keep in the back of your mind, however, that many MS people are oddly wedded to their diagnosis and resent any suggestion they might have lyme. Some, of course, will welcome it, and those are the ones we must try to help.
1. How many lesions do you have? 11
2. Where are your lesions located? "Subcortical deep white/grey matter junction of both hemispheres, most prominent in left frontal lobe of the centrum semiovale." (Whew.)
3. What is your largest lesion? 5mm
4. How long have you had lesions, been diagnosed with MS (prior)? Only had MRI last year (2005) due to bad headaches x3 yrs. No prior diagnosis.
5. Have you ever taken MS drugs? No.
6. If so, what was the outcome? N/A
7. How Long Have you not taken those drugs? Ha ha ha! Trick question!!! I've "not taken MS drugs" all my life!
8. How long have you been on LD drugs? 1 year.
9. Any significant improvement? You betcha! Like night and day! And after babesia treatment -- WHOA! Imagine a poor MS person with not only lyme but babesia. My heart goes out to them.
10. Was your LD test positive or negative? CDC positive.
11. Did you have the Bulls Eye Rash? Yes. But only slightly more than quarter-sized. Largely unimpressive.
12. How long after the bite did the neurological presentation begin? A year.
13. Has a neurologist agreed with LD over MS? Grudgingly, upon being provided CDC positive test, if "hrrrmph" counts as agreeing - and then only to complain that I was being "overtreated" (after 6 weeks of doxycycline). While not remarking at all on his complete misdiagnosis of me despite my insistence that I had lyme, I might add.
Off soapbox, over and out.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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LostCityAgent
Unregistered
posted
Thank you Michelle,
I suppose that I will answer my own poll questions. Thank you to be number 1, you have been one of my greatest supporters on here! Psychotic chopsticks, never forget!
1. How many lesions do you have? I have no exact number. The wording used was multiple in both places.
2. Where are your lesions located? In the brain and in the cervical spine. My brain MRI report stated multiple round to ovoid lesions in both cerebral hemispheres and in the corpus callosum. 5 are enhanced.
3. What is your largest lesion? 8mm in the right frontal white matter.
4. How long have you had lesions, been diagnosed with MS (prior)? I do not know how long the lesions have been around. I am 27, and, I was never diagnosed with MS.
5. Have you ever taken MS drugs? No.
6. If so, what was the outcome? N/A
7. How Long Have you not taken those drugs? N/A
8. How long have you been on LD drugs? 5 weeks, 300mg Doxycycline.
9. Any significant improvement? Slowly, but symptoms still come and go.
10. Was your LD test positive or negative? Not CDC positive, but, it was Igenex Positive.
11. Did you have the Bulls Eye Rash? I do not remember.
12. How long after the bite did the neurological presentation begin? If I remember the first bit properly it happened somewhere between 2000 and 2002. Within a few years or less.
13. Has a neurologist agreed with LD over MS? I refused to see a neurologist.
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LostCityAgent
Unregistered
posted
C'mon you guys. Think of Gwen. She died because of lack of communication. These are young people. CALLING ALL LYME INDUCED MS PATIENTS>
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We have several Lyme/MS members who might be interested in providing their info to you.
Additionally, we have begun to make connections and build relationships with several of the local MS group leaders.
They may also be interested in forwarding your Survey to their respective patient communities.
If you are ok with me forwarding this to the above mentioned groups ... let me know.
As I don't visit Lyme Net very often it would be helpful if you could EMAIL ME DIRECTLY with your permission, and where you want them to send the results.
ie ... what email address should I tell them to send it to.
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