Get PROPERLY tested for Lyme Disease!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby aliyalex » Mon Nov 01, 2010 6:25 am

i had my 1st lyme test via Quest. it was negative. then i heard of Igenex in calif. their testing is more sensitive to tick born disease. this was very positive. you can google igenex. Western blot IGG and IgM will give you a good idea.

this is a good start. IMHO, TBD and environmental toxicity, as well as heavy metals and genetic factors contribute to stenosis and restenosis.

good luck and happy hunting.
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Postby Johnson » Mon Nov 01, 2010 5:35 pm

aliyalex wrote:i had my 1st lyme test via Quest. it was negative. then i heard of Igenex in calif. their testing is more sensitive to tick born disease. this was very positive. you can google igenex. Western blot IGG and IgM will give you a good idea.

this is a good start. IMHO, TBD and environmental toxicity, as well as heavy metals and genetic factors contribute to stenosis and restenosis.

good luck and happy hunting.


I concur. (and that carries such weight!)
My name is not really Johnson. MSed up since 1993
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Postby bluesky63 » Tue Nov 02, 2010 8:45 am

So supposing a person has an undeniable dx of Lyme disease by all holy standards, a classic dx of MS, confirmed CCSVI in multiple locations via venography, definite history of appropriate head/neck trauma, other structural abnormalities and genetic issues, your basic abnormal bloodwork and nutritional/metabolic deficiencies, and on and on and on . . .

How many chickens? How many eggs?

And what's the path forward from the henhouse? :-)
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Postby Taurus » Tue Nov 02, 2010 11:03 am

I totally agree with the remarks of bluesky63.
Please see that during the course of my investigations which included three MRIs at different times, MRV and CT Venogram, Lyme disease tests, history of head/ neck trauma 14 years ago etc etc. I was told by Docs that I have some demylinating disease, not sure if it was MS, stenosis of my both IJVs at C1 level indicating CCSVI, though negative Lyme results but Lyme Disease not totally ruled out due to a sort of rash on my right shoulder/ visit to North America. To add more, I was told by my IR that I also have extended styloid process (Eagle Syndrome) on both sides.
At the End, I stand nowhere as no definite treatment has been proposed by my Docs not even DMDs as they say that you may have benign MS (which I don't agree). No path forward proposed by any of the Docs yet. They say just wait. :roll:
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Postby bluesky63 » Tue Nov 02, 2010 11:30 am

Well, of course the pressing issue for all of us is that dastardly FOX breathing down our necks, catching up, faster or slower, but always gaining.

Evasive maneuvers go only so far. We all need to get out of this clucking mess. :-)
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Postby jenf » Tue Nov 09, 2010 7:43 pm

I received a diagnosis of "most likely MS" after two bouts of Optic Neuritis last year. I went as far as getting a venogram to check for CCSVI, but when the IR found no stenosis, I began to question the initial diagnosis. I went to the National Institutes of Health to find out what was "really" going on. After 3 visits to MD, I received the "you have MS" diagnosis.

Several months ago, my older sister staring having some pretty serious neurological impairments. On her quest for answers, she went to an Infectious Disease doc who after reviewing her records, advised her she had Lyme in her brain, and started her on the IV.

Needless to say, it made me question my "confirmed" diagnosis. I started on doxy almost 2 months ago and haven't looked back. And while I don't know for certain that this is Lyme, I do know whatever I have has been impacted by my current regimen.

I finally have my appt with a LLMD this week, and I wish I would have listened to those who urged me to go to one last year. I didn't comprehend how indistinguishable the two conditions can be, and I imagine there are many others who are in the same boat. I knew I was getting worse, and the CRAB's weren't working... I could feel it. I hope others out there will take heed. I was convinced I had MS. I had been given that diagnosis by a number of doctors, some the best in their field. And I can say now unequivocally; this is not MS.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby aliyalex » Tue Nov 09, 2010 7:59 pm

my LLMD who is world renowned now treats neuro lyme and strongly considers the CCSVI comorbidity when treating. i have all 3.
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Brian and Spinal Lesions Differences on MRI for Lyme and MS

Postby Taurus » Tue Nov 09, 2010 9:22 pm

Hi, I have heard that Brain and Spinal Lesions caused by Lyme and MS are different in terms of their colour, location and size. Can anybody comment on this. :roll:
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Postby jenf » Wed Nov 10, 2010 4:47 am

According to the Infectious Disease doctor I'm seeing, Lyme and MS are "almost" indistinguishable. That said, a litmus test for me was receiving IV Solu-Medrol during my hospitalization last year. Upon my release, what started out as double vision exploded into more symptoms than I could keep track of. Looking back now I realize it was because they had just tampered with my immune system. And while I had lesions, they were "non-specific". However, this changed this year during my visits to the National Institutes of Health. My MRI's there fit the diagnostic criteria for MS.

Here's an interesting article that talks about the indistinguishable nature of the two written by Kate Cavert: http://www.canlyme.com/lymemultiplesclerosis.html.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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CCSVI Forum Please

Postby MarkW » Wed Nov 10, 2010 5:34 am

This is the CCSVI Forum not a Lyme forum. ThisIsMS has plenty of places to discuss Lyme disease, please do not use the CCSVI forum, its busy enough with CCSVI.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby jenf » Wed Nov 10, 2010 6:34 am

I thought we were discussing MS and CCSVI? The problem with posts of this nature shut people out that can offer insight to folks who have DIAGNOSED WITH MS that are FALLING THROUGH THE CRACKS! Besides, Multiple sclerosis simply put means "many lesions". It is simply a DESCRIPTIVE NAME of a disease which causes the nerves to lose their myelin sheath and in particular and to show lesions on the brain on MRI, which Lyme does as well.

I was diagnosed with MS, was tested for CCSVI, and came back to this forum simply to let others know if they DO NOT have CCSVI, to look at other options, like I did. After 3 pages of discussion, one would think this is a worthy post?

Why would someone who wasn't aware of the Lyme MS correlation look at a Lyme post in TIMS? I, for one, appreciate the person who started this topic, whether it's in the appropriate spot or not. Just my two cents...
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Location: Albany, NY

Postby Billmeik » Wed Nov 10, 2010 8:55 am

I went to poland to get my ccsvi work done and they told me I might have lyme. In canada it's very difficult to get the western blot which seems to be the test needed. CCSVI might prove to be the best thing to test for to distinguish lyme from ms.

My neuro told me there is no lyme in bc, the spirochete hasnt spread this far north. I live north of vancouver in an old logging town called squamish. I know lots of people diagnosed with lyme. A gp in town had a daughter with lyme and was something of an expert.
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Postby aliyalex » Wed Nov 10, 2010 9:09 am

imho, neurolyme often is indistinquishable fm other neuro diseases. and neuros know about as much about lyme as they know about CCSVI and for many of the same reasons.

i believe there is heavy comorbidity. PM me if resources are requested, to honor the request for less straying fm pure ccsvi i will leave it there.
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ccsvi

Postby blossom » Wed Nov 10, 2010 1:57 pm

jenf and aliyalex, i for one "really appreciate" you bringing your cases and your experience to this site. i hope you reconsider and keep posting.

true this is about ccsvi BUTccsvi is not even understood yet. by bringing these points here and the info. who knows, some that are following here who maybe got the treatment with 0 results or if they are considering getting ccsvi done may want to check into it further. there maybe a connection who knows even to ccsvi. it's been awhile since i read about lymes. i do know the western blot can miss and has missed a lot of cases that later with better testing found they do have it. lymes maybe connected to why some peoples veins got screwed up. who knows. that's it--nobody really knows.

i feel this ccsvi site and the info. on ccsvi has and is getting more people to think outside the box than ever before. we know now that the way mainstream has treated ms forever isn't the answer.

this ccsvi site has brought nutrition and supplements to the table-hyberbaric chambers-chiropractors-etc.and many thoughts and answers for some because they are looking at ccsvi the blood flow.

i had ccsvi treatment did not help and basically i'm worse off. but i still want to know what's going on with it as it is a work in progress.

it seems to me the whole ms thing is a work in progress and by people that are suffering with it it seems to me any info. that might help somebody is nothing but a good thing.

so thanks again for the info. and i hope you keep posting--it may just help somebody else. wouldn't that be great!!

if there are subjects that i don't want to read about i just pass it by.
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Postby aliyalex » Wed Nov 10, 2010 2:28 pm

blossom, very sensitive and wise points. having had symptoms for 20 plus years, i've been working with these issues in many ways. the box as presented by neuros and infectious disease docs just never rang true to me. i found their motives often schewed by self interest at worst and too superficial findings at best.

a profound teacher said recently that when u have a serious injury/illness, u become an apprentice. i for one have learned much about life in my apprenticeship.

my cns doc who focuses on multiple opportunistic infections, ncluding bacteria, protozoa, and viruses, as well as env toxins, some inherited in utero, esplained to me that the many microbes live in lymph tissue. lymph is dense. they jump to the rich blood supply in the vascular system. the variations in etiology as well as infections make it so complex, it is dizzying, challenging, and very very rich for discovery.

i explore all fronts that bring more essential pieces to the fore and i celebrate the courage, conviction, and compassion that seems to be generated.
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