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Big-time neurologist

Submitted by MacKintosh on Fri, 2006-01-20 21:40.

I need some input from the 'experienced' crowd here.  Monday, 23 January, I have an appointment with a 'name' neurologist who specializes in MSi at Northwestern Hospital in downtown Chicago.  I made this appointment the day I was diagnosed with MS, 19 August 2005.  This was the EARLIEST I could get an audience.  His name is Bruce Cohen, and he's one of the names in the field, advocating stem cell work and blood replacement and considered to be on the cutting edge.  My problem is, I don't know if I should bother going.  I don't believe in the 'autoimmune' explanation any longer and I won't be considering any of the interferons or other 'accepted' MS drugs.  Though I'm in a bit of a lull or maybe even a little temporary deterioration of my progress on abxi, I still think this is the solution, so please, if any of you have some input, maybe you can give me reason to keep the appointment. 

Perhaps you think there are specific questions I should ask?  Maybe some points to bring up?  Taking my nearly five month old MRI in and some rudimentary test results (I was hospitalized on diagnosis due to optic neuritis) just doesn't seem enough to bother going in for.  Talk to me!

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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Mac, I can't say don't

Submitted by Sarah on Sat, 2006-01-21 08:20.
Mac, I can't say don't bother going, but I can say that I would probably cancel. If you decide to go, there are many questions you could ask, but they might just fall on deaf ears.  No matter how big a name he is, if his main interest is in stem cell work and blood replacement, he isn't going to be open to antibioticsi.  Now if, say, his main interest was in infectious diseasesi of the central nervous system, you might be in with a chance of him not thinking you are completely nuts, but then he wouldn't specialise in MSi.  Rica has been disowned by her neurologist, so has Guner, "mine" just seems to have completely forgotten about my existence because he still says exactly the same thing to newly diagnosed progressive MS people: it is two and a half years since I saw him and was told that there was nothing that could be done, go home and get used to it.  I somehow managed to walk home, using my trekking stick and David coming half way, but we left the hospital at 12.00 and I got home at 4.00.  Only about a mile and a half, but I was determined to do it.  Many people helped me on the way and it took me days to recover.

 

With regards how you are feeling at the moment, read my comment to Willow's "backsliding" blog: http://www.cpnhelp.org/?q=backsliding#comment-1203.  You will probably go through several periods when you feel a though you are not improving or even getting slightly worse.  I was in tears last weekend when I started my first two big acrylic canvases because I was so overwhelmed by the big white canvases and my hand just seemed to tire so easily, but yesterday I worked nearly non-stop for at least six hours, happy as a lark.  I was tired at the end of it, though, but I'm fine today.  Well, I was about half an hour after finishing.......Sarah

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but most days I could pass for as good as new.

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Mac, me again!  Another

Submitted by Sarah on Sat, 2006-01-21 08:57.
Mac, me again!  Another remark about "my" neurologist.  David was invited by a group of forward looking GPs to give a talk on CPni and MSi.  They thought it would be a good idea to invite a neurologist to take part.  You know who was duly invited, but he point blank refused to "share a platform with that man."  Bruised ego?  Must be more important to some doctors than getting people better.....Sarah

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but most days I could pass for as good as new.

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Sarah- maybe the operative

Submitted by Jim K on Sat, 2006-01-21 09:32.

Sarah- maybe the operative term in the statement "...that man!" was the term "MAN!"  Some are just not man enough to share a stage with someone they differ with. By the way, this is true even if they, or the other, are women!

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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There is so much here!!! 

Submitted by katman on Sat, 2006-01-21 10:30.

There is so much here!!!  I won't even remember all the things that went through my mind.  My feeling, Mack, is if your insurance covers it - go.  You seem an unintimidated, forthright, and honest person.  That always lends strength to your words.  Make a list of statements and questions as you think of them till time to go and SAY them.  I tend to be pushy in this kind of situation and since I believe there are no dumb questions, I REALLY, REALLY want an answer.  If time is limited, I talk faster and very concisely.  But it is very much like the grocery store- they hate to see a list come in.  YOU are the paying customer and  you don't know it all, but you know something.  But if you have to pay out of pocket, unless you are very wealthy, his ears are too expensive, I bet.

 Sarah, that was a very graphic description of an experience that stands out in each of our minds.  We need these measuring sticks and we can say "Oh, yes!  I know how I was then, but I have come so far from there"   Truly disgusting about "your" neuroi! My version was riding my trike to the barn and getting everyone fed and getting back to the house and spending hours recovering so I could do it again in the evening.  My body has good days and bad and I am thrilled that Marie has now entered this level and I think her anxiety has changed into a very focused passion.  That is much loved by your cheering section, Marie!

My MRI is done and I was very good- didn't wiggle!  "Results are usually back by Wed".

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1

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I would also go, not least

Submitted by Alexandra Gibbs on Sat, 2006-01-21 12:58.
I would also go, not least to ask about stem cell repair options, like umbilical cord scams of the Biomark variety.  I think combination treatments of all sorts should be investigated.

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Started CAPi April 2005, right leg motor function now worse

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I think your decision to

Submitted by raven on Sat, 2006-01-21 14:10.
I think your decision to see him should be based on expecting nothing from him. Our natural inclination is to view someone of his status with a sense of trust and assume that he will be open to what you (the lowly patient) have to tell him. On the other hand, perhaps you are the messenger who he needs to hear at this time. Very few people in such powerful positions are open to such things. They are too emeshed in the ego and their position in the social hierarchy. Only your heart can tell you to do. But be warned. It can be very hard for you emotionally if he discounts what you have to say. He is operating from a position of power and you have to see through this and protect your feelings from any negative assault. On the other hand, you could treat it with a sense of levity and discovery to find out what he is up to. Perhaps he has something to offer such as stem cell repair. I have often thought about writing to my old doctors to tell them about my progress but I let go of it. It doesn't matter any more. The only thing that matter is that I have been able to find some treatments that are working for me. BTW, my typing is sooooo much better! Fly free, Raven

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Feeling 95% well-going for 100. Still testing + for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.for MSi and/or CFSi. Also EBVi and HHV6. Doxyi, Azith, Tinii pulses. NACi, Iodoral, T3, BHRT, MethyB12 injections, Nitro patch, LDNi, FIRsauna, methylation supps

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Bravo Raven! You are

Submitted by kitkat2 on Sat, 2006-01-21 16:24.

Bravo Raven! You are exactly right!  It is that position of assumed power that can intimidate us.  I've been there.  This is the reason I am self-medicating on the D W protocol--and seeing improvements.  Right now I figure I've got everything to gain by "risking" regaining my health on the protocol.  And I like to avoid unpleasant visits with unsympathetic docs.

 

KK2  :)

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

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Love that KK2! Risking 

Submitted by katman on Sat, 2006-01-21 16:37.

Love that KK2! Risking  regaining my health!  That should be our motto!  When my neuroi saw me first and I told him I was doing abxi his reply was "Don't do this - you are taking your life in your hands"  Duh!  I know I am repeating myself but......

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1

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Ok, if you were moi, what

Submitted by MacKintosh on Sat, 2006-01-21 17:11.

Ok, if you were moi, what would you guys have to say to him?  People are telling me I'm nuts to give up the chance to see Bruce Cohen (hushed, reverent whispers always accompany the utterance of the name) and I have to go now, since I did not cancel in time to give decent notice.  I feel kind of stupid going to him and saying, 'by the bye, I'm getting better'.  First, he'll just say I'm in a remission-phase, not a cure-phase.  Second, I feel I'm keeping him from seeing people who may need him (say, for other problems, like mercury poisoning, perhaps?).  I just feel like a heel going at all now, like an unbeliever attending a church I shouldn't set foot in.  That said, can I ask any questions for you , the community at large?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

___________________________________________________________

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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I'm learning so much from

Submitted by Jim K on Sat, 2006-01-21 17:12.

I'm learning so much from this forum discussion. It speaks so much to me, both in terms of what we have all been through with being treated poorly in medicine, and the great psychological and emotional shift we have had to make to "take out lives in our hands." Amen to that, Rica.

Mac- I don't know much about the leading edge of MS stuff, but if there are really some stuff he has available in terms of supporting regeneration of nerve, and you can hold the stance suggested by others here so you stay in the consumer role and hold your ground, it might be worth while. Whether he's open or not to the infectious model may matter less than whether he has something truly new to offer. 

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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So you have to go!  Let's

Submitted by katman on Sat, 2006-01-21 20:29.

So you have to go!  Let's begin from there.  You MUST give him this site and emphasize that there is a PHYSICIANS PAGE with real medical people doing real research and hand him his paper.  Have your list of questions and ASK them.  Tell him what you could not do (maybe 3 quick things) and what you can do now.  I did this and mine said "Call me if you ever need me".  He was NOT impressed.  BTW all, I just walked/ran 1 mile.  It was mostly walk but you get the point.  It took 27 minutes- I used to run at least a mile every day in less than 5 minutes.  So I'm slow(er)! ok

MY questions included "Have you EVER seen this improvement?" I asked while hopping up and down (Had to ask that one 3 times)  Have you ever had anyone get off of interferon?   Never got an answer.  Have you  ever had a progressive improve?  No answer.  You may have one who can talk.

Mack, do you have a number on the EDSSi scale?  Do you have a classification such as PP, SP or RR?,   I probably should know but don't.

Rica. 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1

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Rica, Congrats on your

Submitted by kitkat2 on Sat, 2006-01-21 20:55.

Rica, Congrats on your run/walk!  I am bursting with happiness for you.  I may not have goats to care for, but I've got kids and cats and rabbits. I think of you each time I venture out to their hutch at feeding time.

I sure wish that you, and your contagious enthusiasm, could attend our neuroi visits with us.  I must confess I get a bit flustered at my neuro's.  He is the director of an msi clinic here in my town.....pretty intimidating for me.  Sort of like Mack's Dr. Cohen I suppose.

Oh well..this too shall pass.

Mack, if you go, I want every juicy detail.  I mean, if you don't mind.Wink

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

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KK2  You are a smart

Submitted by katman on Sat, 2006-01-21 22:15.

KK2  You are a smart person- obviously.  If your dad is a musician, he knows about rehearsal.  Rehearse your appointment.  You are the consumer so examine the merchandise.  Make your list and practice asking what you want to know.  It is his job to answer your questions.  My doctpr asked me how old I was once and I said "Your tell me first."  He did.  In the orchestra it is called stage fright.  Once an RN friend in the orchestra was doing her thesis and asked me after a solo why I didn't have stage fright   .  I said "You know how you always say- if only I could do it again, I could do it?  I tell myself that this is again!."

It is very true that fear is what makes us afraid.  Get 'em, KK2! 

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1

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Nerve regeneration is

Submitted by MacKintosh on Sat, 2006-01-21 23:55.

Nerve regeneration is good.  Referring him to cpnhelp.org is absolutely a definite.  I have no rating on the EDSSi scale, so I can't point at the huge improvement, but I will point at the dead stop of the progression that was just not abating, even with steroids.  Come on, you guys, he's supposed to be the 'big time' and I may never get this chance again unless he's intrigued with the cpn theory.   Throw your questions my way by Sunday night.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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A thought just came to me

Submitted by katman on Sun, 2006-01-22 11:26.

A thought just came to me of a concrete subject- though you may get the same reaction my neuroi. had.  Doesn't happen period.  Sarah's disappearing lesions-  maybe we better say greatly diminished lesions.  You could tell him of her case and remark that my (Rica's) MRI results will be known Wed. (maybe say Thurs. in case the results are delayed)  History:  my first 3 were increasingly worse, the fourth "no worse" in June, 2005- this last, the fifth, Jan. 21, 2006.  You could offer to "leave word" about the results.  Maybe it would spur enough curiosity to get him on cpnhelp. site.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1

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 Now there's an idea for

Submitted by Jim K on Sun, 2006-01-22 11:39.

 Now there's an idea for the website: How about posting before and after MRI images and radiology reports? All you need is a scanner, and we can make a separate image gallery for this.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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Good idea, I'm thinking of

Submitted by Sarah on Sun, 2006-01-22 12:21.
Good idea, I'm thinking of doing it myself.  It would be better if I photographed them on a light box, though, and then scanned the transprencies on my film scanner.....Sarah

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but most days I could pass for as good as new.

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Well, there are my

Submitted by Sarah on Sun, 2006-01-22 12:27.

Well, there are my disappearing and diminishing lesions, of course, and hopefully Rica's too in a few days, but its not the neurologists here who seem interested in it, but just other physicians and pathologists who know enough about MSi to know that there is more to it than just RRMSi.

However, to be more constructive, give him the figures Jim has posted from Stratton/Mitchell and Sriram about improving patients.  http://www.cpnhelp.org/?q=Stratton-MitchellCaseReports  David is sending Jim some of his figures tomorrow but I will mail some to you later today.

Give him David's web-site:http://www.davidwheldon.co.uk/ms-treatment.html and Stratton's Vanderbilt info: https://medschool.mc.vanderbilt.edu/facultydata/php_files/part_dept/show_faculty/show_partpathology.php?id3=971

Stratton will willingly communicate with him. You must not forget to mention any points with regard to you and the treatment. Did you feel at all fluey when you started, ears popping with flagyli and so on.  However minor, these are all indicators that you are getting rid of an infection. Of course as a neurologist he might not understand the importance of these, but they are.Now tell me why the text has turned purple again!........Sarah

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but most days I could pass for as good as new.

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Try scanning them with the

Submitted by Jim K on Sun, 2006-01-22 13:33.

Try scanning them with the scanner lid open or closed. Also, some scanning software has a "transparency" setting.  I forgot about the complications of scanning something which is transparent! Certainly the radiologist reports are scannable-- I would never say that a radiologist report was transparent, they seem quite opaque to me.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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If my results warrant it, I

Submitted by katman on Sun, 2006-01-22 14:28.

If my results warrant it, I would be happy to send them to David.   If we do something like that, it would probably be the most demonstrative picture  of the 3rd (worst), 4th, ("not worse"), and 5th (?).  My PCP is VERY interested in all this and maybe I should ask him before I say all this but I really think he is involved, just because he is interested.  And he did say a month ago that he expects coronary heart diseasei to be implicated any day.  Jim, I would be happy to put the  comparative films on here if that helps and we can figure out how a computer dummy like me can do it!  Maybe these will show there is nothing left, though!

Tomorrow is day 1 of Flagyli so by Tues evening I will probably begin to get "fuzzy"  

I just ran/walked my mile!.  2nd day in a row but begin Flagyl Mon- don't know during fog if I can do it each day!

Rica

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1

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Sarah's Purple Prose

Submitted by Jim K on Sun, 2006-01-22 19:43.

 

Somehow you are generating lots of html code for font size and color. I think when one copies and pastes from some other web page or software, sometimes the coding for font color and size gets pulled along with it inadvertently. I edited it out of your post, Sarah. If it happens again, go back to 'edit' and click on the little 'html' button on the rich text editor. It will show you the coding behind the appearance and you can delete the extra stuff there.

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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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Holy cow! go away for a

Submitted by mrhodes40 on Sun, 2006-01-22 19:51.

Holy cow! go away for a couple days and life goes on here! Missed you guys and here I see Rica ran a mile----hey Rica keep track of your times that's a measurable parameter, and thanks for the encouragement---and Mack is going to give the word to (hush) Dr Cohen!! (ohhh, ahhhA!) You can't know what would persuade him, it kind of depends on the background he has and his interests. You might mention that this site has medical people involved and entire citations are available, not just abstracts. This is important. ALso many docs have beeen cautioined that their patients might have gotten "bad info from the internet" and they tend to imagine every bit of info a patient offers is bad therefore and that we have not the ability to evaluate the info we see, but saying that we hav citations and also tht medical people re her eto evaluate it makes it more credible. good luck!
marie

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

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Will check in at 8a.m. for

Submitted by MacKintosh on Sun, 2006-01-22 22:27.

Will check in at 8a.m. for any further suggestions or questions regarding the appointment with Dr. Bruce Cohen.  I promise to report in sometime tomorrow night on the outcome.  Thanks, everyone.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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Good luck Mac! like Alex I

Submitted by mrhodes40 on Mon, 2006-01-23 00:22.

Good luck Mac! like Alex I have a reason to keep a neuro because I have had MSi for a long time and may need stem cells I do not know yet
marie

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

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Doctor visit went well, on

Submitted by MacKintosh on Mon, 2006-01-23 15:36.

Doctor visit went well, on many levels.  The man is kind, smart and approachable.  I know I didn't get the full benefit of his knowledge as I closed the door on conventional treatment early on in the interview.  However, he is aware of the Vanderbilt work and we discussed the difficulty of  identifying cpni and the differing views in the medical community.  He also brought up the possibility that cpn does not 'cause' MSi, but might be the infection that stimulates exacerbations of MS, likening it to the accepted fact that other infectionsi initiate MS attacks.  He specifically brought up a medication that's effective against herpes also having some good results in the MS arena (valtrex?), but reminding me it may be effective against MS only because it quashed herpes, which in turn may trigger an MS attack. 

While aware of Vanderbilt, stating he was ecquainted with some of the principals there, he was not familiar with David WHeldoni, so I was, I suppose,  a little pushy in asking him to read through David's protocol and other pages.  I had printed it all out and left the whole packet with the good doctor.  He seemed interested, but not convinced, but then I am trying to make a quick, cursory judgment on a man I've never met before.

Regarding remyelinization, he said he'd heard Tysabri may be back on the market in March, which seems to be good news to me.  He also commented that recovery requires more than remyelization, as broken neurons do not unbreak.  Remyelinating is of no good if the path is permanently damaged.  He said the early recovery people experience may be the re-routing of pathways which are taking over for the permanently damaged ones.  I was particularly thinking of Marie, who is recovering abilities long thought lost and I related her case to him.  He responded it could just be a case of 'remitting', reiterating to me the definition of relapsing/remitting, but not unkindly or without sympathy. 

He did say he would be interested to see clinical proof of improvements among our community here.  I would not have taken this on a year ago, but if you want to start gathering your proof and/or stories for me to pass along, let's do it and I'll take responsibility for getting it to him when I go back in March.  (I'll post a new forum topic on this soon.)  When I brought up Marie and Rica dropping meds they'd needed for years, he looked at me a bit skeptically, but said he's open to receiving the info.  He really seemed pleased, although surprised, that Marie had given up her meds, when I explained she's a long=term patient.  (Thanks for posting that info yesterday Marie, or I could not have offered it to him today.)  

On a personal note, he examined my five month old MRI and pronounced my status as undiagnosable, as I have so little damage on the scan and have only one identifiable 'episode' in my history.  He has ordered a new MRI of my brain, as well as one of my spine, as I mentioned numb/tingly toes and fingers and he wants to rule out spinal involvement.  I am 0-1 on the EDSSi scale and I asked what test I'd failed.  He said my 20/30 vision.  Well, I wear no-line bifocals of the miniscule, trendy, variety, so I'm not surprised I couldn't read the tiniest of print on his little card.  I think I'll just call myself a 0 on the EDSS scale. I run, jump, hop, touch my nose just fine with closed or open eyes, have very cool reflexes and can chew gum and walk at the same time, too.  Okay, no more smart comments!  He says I am in a place 'too early to treat', regardless.  (I think starting abxi when I did was EXACTLY the right thing to do. Now I won't GET to  a place where a conventional doctor would see a need to treat me!)   

All in all, a very good day.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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great mac! Good news! I

Submitted by mrhodes40 on Mon, 2006-01-23 17:57.

great mac! Good news! I think though that Rica's story s better than mine at this point. I'm just off the spasm meds and still a nice relaxed body. I slept well again last night, peaceful and quiet legs. they felt Normal and I have to tell you I thought to myself THis is normal. I FORGOT what normal felt like. there is no low level buzz or grab just waiting to "set off" me legs. They are quiet I CANNOT TELL YOU how wondrous this unless you have experienced the flexor spasms and restless legs. It's beyond description
marie

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

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It's a complex situation

Submitted by r2004 on Tue, 2006-01-24 04:54.
It's a complex situation when damage has been caused by a disease and this damage is not undone with the removal of the disease - which is the situation we MSi people face. Regeneration as I understand it will depend on rebuid at a cellular level and might be a bit chaotic. My Neuroi reckoned the ABxi treatment to be worthless but if I wanted to give it a go to do so. That's as good as you get I think and I'm grateful for his stance. I have formed the opinion that the medical world is pretty closed off to the CPni factor and if they woke up could be avoiding so much grief. If I'm "fortunate" it is that I pressed on 2 occasions for private consultations and paid for scans and this documented the events "seperated by space & time" and finally an LP and confirmation of MS. I was further fortunate to get fast-tracked onto Copaxone. However, stumbling on David Wheldoni's website whilst in the depths of despair is how I am here - and feeling better and positive. Improvements have happened quickly and backed up by all you guys leaves me certain I am on the right track. I would be ultra cautious whilst committed to (and getting results from) the ABxi treatment to do anything else; these common or garden anti biotics are relatively safe. The issue of repairing the residual damage? I'm not at that stage yet and am again fortunate to have got on the "cure" before massive damage occurred. Careful of career-Neuros with papers to publish and drug companies with money only for profittable research. In our best interests? Mmmm.

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Diagnosed RRMSi May 2005; started Copaxone August 2005. Found David Wheldoni's work October 2005 and started protocol November 2005. Added Atorvastatin 20mg May 2007.

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Hi r2004 How nice that you

Submitted by katman on Tue, 2006-01-24 09:24.

Hi r2004 

How nice that you are here!  Welcome.  What a great attitude your dr. has.  I am not a med. person but have always been VERY active.  Sarah on this site too is still improving.  Anyway, we don't know the extent of damage in us as indiiduals yet but just stubbornly "doing" seems to make a huge difference in capability.  I know this because 1 year ago I could barely walk (if it deserves that description)  and now I am "learning" to run and it is working.

It is a far-thinking thing you did to plan ahead, expecially by design.  I was fortunate in that all fell into place by accident.  Right now this site is waiting on the official results of my MRI, ordered by my dr, not my neuroi who refused and then disowned me.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1

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MacKintosh, Glad to hear

Submitted by B Positive on Tue, 2006-01-24 17:19.
MacKintosh, Glad to hear that you went to your appointment. I can understand your hesitation. I had a similar experience when I went to Rush's MSi Center, also in Chicago. I had seen a couple of neurologists over a period of many years and suddenly I got hit with the "possible MS" line at the bottom of an MRI. Well, two more neuros, one diagnosis and two differing treatment recommendations later, I decided to look around. I found the information for Dr. Cohen, at Northwestern, and Rush Presbyterian-St. Luke's MS Center, both in Chicago. I chose to see Dr. Katsamakis at Rush's MS Center. Their MS Center sees over 3000 MS patients a year. With that many MS patients, I assumed they should be more informed, regarding MS, than a Neuro "down the street", so to speak. Having various treatment information from the web, including LDNi info, and a handful of general questions regarding MS, I went to my appointment. I found the doctor very personable, informative and "straight-forward". Overall, I enjoyed the visit, found it helpful and was glad I went. (I had to pay for it myself, but the doctor knew this and gave me a nice discount on his fee.) "My own doctor" After I was diagnosed with MS, my mother-in-law, who is a nurse, started to investigate into the current MS information and she said something to me that I live by today. She said, "I think you need to be your own doctor." That was the philosophy I was using already, but didn't have a term for it. I believe that there are a lot of people trying to find a cure or even a better understanding of MS. I believe that some of that resulting information is "fact" and some is "flawed". Ultimately, it is me and my family that has to live with this and it is my duty to do the best I can at beating/delaying/managing this. For me, the more information I have, the better I can do that. Anyway, sorry for the long post, but I just wanted to say that I am glad you went. Brian B Positive - "It's in my blood."

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Brian B Positive - "It's in my blood."

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