Abstract #D646 - P.K. Coyle, et al, Multiple Sclerosis vs. Lyme disease a diagnostic dilemma. Forty-seven patients were identified as possible MS patients. Many had brain lesions on their MRIs, consistent with MS 61%. CSF was constant with MS in 46 % of the patients. The final breakdown of the 47 patients was: 21 MS, 15 LD, 7 had findings constant with both LD and MS. Thirteen patients responded to antibiotics but only those who had CSF findings consistent with LD.
a lyme disease diagnostic is good news! Antibiotics work...
Jacek Kosteki
-
BrendaReqier
- Family Member
- Posts: 77
- Joined: Sat Nov 21, 2009 3:00 pm
- Contact:
a few heads ups for people coming here in the next few weeks:
--you might want to bring documentation that you have ms. Like brain mri's if you have em or medical histories...
Kostecki puts the 'missing 40%' from buffalo in the 'query lyme disease' column so ruling that out before you get here is a good idea. That might colour your decision too as it's a long way to fly and a lot of money to get a negative and he's handing out about 40%...
its really hot here right now and they have no air con, and to open a window is to invite lots of mosquitos over for drinks. If I had it to do again I would bring one of those small fans you can travel with...
and my cool ties.
I think there is actual science going on here not just medical tourism, Im ok with the whole trip.
--you might want to bring documentation that you have ms. Like brain mri's if you have em or medical histories...
Kostecki puts the 'missing 40%' from buffalo in the 'query lyme disease' column so ruling that out before you get here is a good idea. That might colour your decision too as it's a long way to fly and a lot of money to get a negative and he's handing out about 40%...
its really hot here right now and they have no air con, and to open a window is to invite lots of mosquitos over for drinks. If I had it to do again I would bring one of those small fans you can travel with...
and my cool ties.
I think there is actual science going on here not just medical tourism, Im ok with the whole trip.
Bill are you saying that he is finding 47% do not have ccsvi and have ld not ms,or is it the people where not tested for ms befor going there? Sorry it is early here and not understanding what you mean.Soon we will be there,Hubby could not have the spinal tap, but they did see brain mri and showed lesions.
We have so many feelings right now it would be great to bottle them some how.Did you get to meet Kate?Please keep us posted on how every one is doing and Best of luck to you ,Brenda and everyone else there.Sindy
We have so many feelings right now it would be great to bottle them some how.Did you get to meet Kate?Please keep us posted on how every one is doing and Best of luck to you ,Brenda and everyone else there.Sindy
Good Luck Brenda, keep us updated on how things are going
@Sindy - I am sure Bill meant 47% do not have ccsvi, I haven't read the other threads but there is certainly lot of FUD around CCSVI. I have yet to see any patients from Canada coming to India who has done any kind of tests like MRI of the Cervical (neck region) or Doppler Ultrasound of the neck.
@Sindy - I am sure Bill meant 47% do not have ccsvi, I haven't read the other threads but there is certainly lot of FUD around CCSVI. I have yet to see any patients from Canada coming to India who has done any kind of tests like MRI of the Cervical (neck region) or Doppler Ultrasound of the neck.
Yes very true,i know we wanted testing here in canada but to get in for testing was to long, we called for testing 4 months ago and only got a call last friday and was told in a few months,by then we are booked and they re do the testing there so it seamed a wast of money for us we would have to travel to another province to get testing.
Hubby has had tones of mri's and full body scan, at least we have the mrs and the medical records for him. thanks for the reply exoHeath....Sindy
Hubby has had tones of mri's and full body scan, at least we have the mrs and the medical records for him. thanks for the reply exoHeath....Sindy
-
ndwannabe
- Family Elder
- Posts: 290
- Joined: Sat Jan 02, 2010 3:00 pm
- Location: SF Bay Area, CA
- Contact:
I am one of the "no CCSVI" cases. Dr. K did test me for Lyme, came positive.
Although I was firmly diagnosed with MS three years ago (in the US) with several MRI's - rain and spinal, with dye and without + a spinal tap.
Lesions on the brain, Dawson's fingers, at least one (big) lesion on the spine.
Actually, the whole experience made me wonder if the term "Multiple Sclerosis" is just a description of the symptoms, and not of the actual disease.
Something like the term "Fever" is not a disease per se. Fever can be caused by many things - flu, appendicitis , pneumonia.
So I theorize that MS can also be caused by numerous things - CCSVI is one of them, Lyme is another, <list to be continued>
Fever - elevated temperature (symptom)... Multiple Sclerosis - presence of multiple lesions on CNS (symptom)...
Although I was firmly diagnosed with MS three years ago (in the US) with several MRI's - rain and spinal, with dye and without + a spinal tap.
Lesions on the brain, Dawson's fingers, at least one (big) lesion on the spine.
Actually, the whole experience made me wonder if the term "Multiple Sclerosis" is just a description of the symptoms, and not of the actual disease.
Something like the term "Fever" is not a disease per se. Fever can be caused by many things - flu, appendicitis , pneumonia.
So I theorize that MS can also be caused by numerous things - CCSVI is one of them, Lyme is another, <list to be continued>
Fever - elevated temperature (symptom)... Multiple Sclerosis - presence of multiple lesions on CNS (symptom)...
-
mshusband
- Family Elder
- Posts: 249
- Joined: Sun Jan 24, 2010 3:00 pm
- Location: Pittsburgh, PA, USA
- Contact:
Yep you hit the nail on the head NDwannabe ...
MS is not a disease. Neurologists haven't been able to define it as a disease for a reason. It's not ...
for that matter CCSVI isn't a disease ... it's a genetic abnormality (fact) ... that after a person is done growing takes some time to present itself - which then causes MS lesions.
Catch it early, stop CCSVI and the MS lesions should stop as well and potentially heal.
It's gall going to be proven ... it's the early days and we need to be patient.
The best thing everyone can do is find a doctor involved in this and get treated ... AND make sure they are thorough ... Dr. Zamboni found azygos issues in 86% of people and jugular issues in 91% of people - regardless of MS classification (RR/SP/PP/RP) ...
Make sure the doctor is thorough ... I believe Dr. Sclafani is going to be. I believe Dr's in other countries can be, but I don't hear enough azygos reports to tell me that they are finding things Dr. Zamboni would have ... and I think that's the key ... since the spine is the key to progression in MS.
MS is not a disease. Neurologists haven't been able to define it as a disease for a reason. It's not ...
for that matter CCSVI isn't a disease ... it's a genetic abnormality (fact) ... that after a person is done growing takes some time to present itself - which then causes MS lesions.
Catch it early, stop CCSVI and the MS lesions should stop as well and potentially heal.
It's gall going to be proven ... it's the early days and we need to be patient.
The best thing everyone can do is find a doctor involved in this and get treated ... AND make sure they are thorough ... Dr. Zamboni found azygos issues in 86% of people and jugular issues in 91% of people - regardless of MS classification (RR/SP/PP/RP) ...
Make sure the doctor is thorough ... I believe Dr. Sclafani is going to be. I believe Dr's in other countries can be, but I don't hear enough azygos reports to tell me that they are finding things Dr. Zamboni would have ... and I think that's the key ... since the spine is the key to progression in MS.
Bill's wife here. He wanted me to correct some info from Dr. Kostecki.
Tonight he clarified that of his 160-180 patients in his study so far, 84% of patients have stenosis and 16% do not. Of those 16% 1/3 are positive for lyme disease (which makes about 5% of his group positive for lyme) Also, for interest he uses the western blot test. hope that helps.
Tonight he clarified that of his 160-180 patients in his study so far, 84% of patients have stenosis and 16% do not. Of those 16% 1/3 are positive for lyme disease (which makes about 5% of his group positive for lyme) Also, for interest he uses the western blot test. hope that helps.
Thank you Billmeik and wife. The information you have provided is invaluable. It reveals a lot about Dr. K.'s thoroughness and his holistic approach. Our turn is on June 27. Now I know what to expect.
I also agree that MS is not a disease. The way I see it, it is a symptom of something else that went aery. I for one easily recover from a flue and in fact, apart for the 'MS blanket', I am exceptionally healthy. Never believed my immune system went mad, and decided to attack myelin, and then only my CNS
Neurologists could never provide an answer that made any sense to me. Also, the very wide disparity in 'MS' courses and outcomes certainly points to a symptom that has multiple culprits.
For those of us arriving on June 26th, my wife and I are arriving from Holland and are really looking forward to meet you folks.
I also agree that MS is not a disease. The way I see it, it is a symptom of something else that went aery. I for one easily recover from a flue and in fact, apart for the 'MS blanket', I am exceptionally healthy. Never believed my immune system went mad, and decided to attack myelin, and then only my CNS
Neurologists could never provide an answer that made any sense to me. Also, the very wide disparity in 'MS' courses and outcomes certainly points to a symptom that has multiple culprits.For those of us arriving on June 26th, my wife and I are arriving from Holland and are really looking forward to meet you folks.
We will be leaving for Tychy in less 2 weeks. How important is it to have Mri's to take along or what other records should we have. I was under the perception that they would test for blocked veins and fix that if possible and necessary. My wife has had a diagnoses of MS since 91. We are in Manitoba and see our Neurologist maybe once a year and they are probably not going to rush any information to us so we can bring it along to Poland.
Thanks for the clarification Bill's wife. The earlier post was a little confusing and scary.
Hope all goes well, Brenda
sindy- how did you get the Mri's and records?
Waiting to met some of you soon.
Thanks for the clarification Bill's wife. The earlier post was a little confusing and scary.
Hope all goes well, Brenda
sindy- how did you get the Mri's and records?
Waiting to met some of you soon.
dont stress about the proof of your ms diagnosis. It's just a handy thing to bring along for the first day consult with a neuro. I mean I have lots of mri's lying around the house I could have easily thrown in...
Ya I got sue to clarify my numbers while I was in the hospital. I was basing my wrong guess on the last 2 groups not on facts...
btw: I just had an awesome sleep and woke up with a numb right hand that is almost better. Fixed bladder allows longer sleep allows healing...
Yes!
Ya I got sue to clarify my numbers while I was in the hospital. I was basing my wrong guess on the last 2 groups not on facts...
btw: I just had an awesome sleep and woke up with a numb right hand that is almost better. Fixed bladder allows longer sleep allows healing...
Yes!