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Our trip to the new and most amazing “Vander-Mall”

Submitted by Kimscupoftea on Wed, 2009-07-15 21:16.

Seeing the much anticipated new site for Dr. S. was nothing short of amazing! The end capi of the “mall” is white with HUGE black letters telling you that this is the Vanderbilt Medical Center.  We drove a bit further to see the middle part labeled as the main entry for the center where the offices were. We could park very easily and close to the front door. As you enter there was a couple gals waiting to greet you and guided us where we needed to go. As I looked up the escalators in disbelief, I had my Mary Tyler Moore moment wanting to Frisbee fly a beanie hat in amazement! OMG is an understatement after for those of us who visited his old “closet” crammed next to the ER with little to no space to park.  The so called mall interior was Vanderbilt exclusive as it resembled an airport with all the doctors a hall away from the next. Bathrooms at every turn and the smiling faces were everywhere!  We could tell this was something really big.  

 

My appointment went very well as he examined me with great anticipation, I felt his mind was working warp speed!  He totally loved the 25 ft walk videos that Ken sent him and asked me to walk. He commented that I looked a little stiff. I then said “well if you drove 12 hours straight to get here, wouldn’t you be stiff too?!” He smiled and said well its only 10 hours anyway! The appointment was a bit shorter than previous ones only lasting about an hour. Coincidently, he had just had a VASCULAR NEUROLOGIST joining Vanderbilt that day! Ken and I sent him a notebook of articles on vascular blockages in MS. We told him we would like to be tested (MRV) around my next appointment. Not that I’m ready for any surgeries yet but it’s nice to know.  He wants to do another MRI at my next appt. anyway.  He did ask me if I was a coffee drinker in which case on my azith days in place of my pyruvate he said I could optionally just have a cup of coffee or a Mountain Dew. He said caffeine is caffeine. I’m still doing the pyruvate (3g) anyway. He would not budge on changing the length of my pulses even if I could do at least a 10day with little problem.  If it’s not broken don’t fix it I guess.

 

Oh yeah, I finished pulse 18 after I got back from TN. I was humming along fine until day 6. Almost there….went golfing with Ken and the boys but I was feeling crummy and decided to just watch. It kind of sounded like watching a ping pong match only you were the ball! Way too loud for me but I knew I was almost home free.  I know I’m getting better especially after I see some of last year’s taped 25 foot walks—I actually look more toned too. Maybe the water aerobics helped too!  Just one foot in front of the other is all I’m asking for. At least today anyway…….. Kim Laughing

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RRMSii since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagylii Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

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Great news about your

Submitted by Michèle on Thu, 2009-07-16 00:41.
Great news about your progress Kim, and it is exciting to hear about the new premises.   It give you confidence to hear that our hero doctors are being given due respect and consideration by being housed in smart new premises.

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

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Guess I am a bit behind but

Submitted by Louise on Thu, 2009-07-16 04:27.

Guess I am a bit behind but what does the Caffeine add to the azithro use in the body?  If you think Ken could tell it better please ask him to say a few words on it.   And are your pulses now 7 days?

How much Rifampin are you on and where do you put it in your shedule?

I sure would like to see a few of those videos for comparison, it is a great record for your progress and the effectiveness of capi in your case.  Keep up those water aerobics, have you started to lift weights to get more buff?  

You are an inspiration Kim.    Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

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Louise, I will let Ken

Submitted by Kimscupoftea on Thu, 2009-07-16 10:17.

Louise, I will let Ken explain the caffeine part for you. He's way more able to decifer what Dr. S. was explaining. 

  As for the Rifampin (300mg), I take one in the am before breakfast and the other before dinner. its all a time thing since you have to have an empty stomach. I'm still doing a 7 day pulse with little to no problems. My azith days are M W F I take at lunch or with afternoon vites. (of corse the pyruvate is always 30 min before.) if you'd like a full schedule of my meds let me know.

I will try to post some of the walks to compare my progress, too! I want folks to see that there is a method to the madness!!!Wink

Kim

 

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RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyli Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

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Kim, do you mean that you

Submitted by Sarah on Thu, 2009-07-16 12:55.

Kim, do you mean that you started the pulse before you left for Tennessee?  If so, I'm not surprised you looked a bit stiff, never mind the ten or twelve hours stuck in a car.  No you don't mean that if you are doing seven day pulses.  I'm glad Sriram doesn't want to change that: five days was quite long enough for me and David always says there is no point in doing longer than a week.  I'll bet, though, that your quick fire response the comment about your stiffness was further proof that you were on the mend.

The new medical centre sounds superb: a good use for an unwanted shopping mall.  But I hadn't heard of Mountain Dew before, I thought it was something you find in the early morning half way up the Pyrenees.  So I had to look it up, but it has no caffeine!  (Unless Wikipedia is wrong, which it often is.)...............Sarah  

An Itinerary in Light and Shadow

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

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We were a bit surprised

Submitted by notasperfectasyou on Thu, 2009-07-16 14:20.

We were a bit surprised about the caffine suggestion too.  I also wondered about the suggestion because caffine is a vasoconstrictor, but that's another discussion.  The idea was proposed not a stated change.  Was simply and inquiry, "Are you a coffee drinker?".  Apparently, there is thinking that caffine can be substituted for pyruvate.  Kim doesn't really drink coffee, but has an occasional latte at Starbucks.  I bought her one to save in the refrigerator and she ended up taking her pyruvate with it one day.  She called me and left me a voicemail - I thought something was wrong with the system here because the message sounded like it was on fastforward.  Nope, Kim was flying on caffinated pyruvate.

I think somewhere here or at TIMS there is a discussion of how we were originally told to do 15 days pulses and we got that clarified to 7.  Kim's always been on 7 day pulses and she thinks she'd like to try more than that, but Sriram seems to feel that it's not broken, leave it alone.  I'd have to chat with Kim about the videos.  We recognize the importance of them - I also think we are really cautious about getting ahead of ourselves.

We deliberately delayed Kim's 18th pulse until after we got back from TN.  Normally we start the 1st of the month, but this month Kim started on the 7th.  So she just finished and is now on 4 days of ibuprofen to help her get back to normal.  The new Medical Center is really impressive.  It's obviously not entirely MS.  As I understand it, Vanderbilt is moving all the clinic's offcampus and this converted mall is it.  Sriram is clearly proud of his new space, it was really nice.  Then of course there was the notebook of articles I sent him, he said something to me about my injecting a little humility into the discussion, it was rather cute.

http://www.energyfiend.com/caffeine-content/mountain-dew

Ken

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In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

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Sarah, I definatly waited

Submitted by Kimscupoftea on Thu, 2009-07-16 14:20.

Sarah, I definatly waited to do my pulse AFTER my visit to TN. Dr. S said sodas in general that have caffeine are fine if you don't drink coffee.  The Dew was an "upper" of sorts when we had to pull the "all nighters" studying at school. I guess thats why you do those things when your young!Cool

 

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RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyli Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

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I talked to Dr. Sr. when he

Submitted by Lala on Fri, 2009-07-17 02:41.
I talked to Dr. Sr. when he was at the chlamydia conference in Prague and he said that caffeine is helping his patients. I was suprised as I knew about the porphyriai issues, but I agreed with him as I am strong daily coffee drinker and it is definitely helping me with energy and mental state. This conversation passed when we drank our coffees during a coffee break. :) I am glad they have such new pleasant place for their work. I pray they will also have enought money to continue in research.

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On Wheldon protocol since 02/2006, added rifa 10/09 for CFSi and many problems 30 years (cpni and mycoplasma)

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If the idea with caffeine is

Submitted by Norman Yarvin on Fri, 2009-07-17 17:13.
If the idea with caffeine is the same as with pyruvate, then the purpose is to draw Cpni out of the cryptic state so that it can be killed by antibioticsi. That would mean it's something you normally should avoid: drawing Cpn out of the cryptic state means getting it into the replicating state, and in the replicating state it is replicating: growing, feeding, taking you over. At least as regards long-term health, the idea would be to only take caffeine (or pyruvate) when one is ready to ambush the Cpn with antibiotics as they come out of the cryptic state.

Of course one also needs to function in daily life, and for that, compromises as regards long-term health may be necessary.

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KimThank you for the

Submitted by loriyas on Fri, 2009-07-17 19:18.

Kim

Thank you for the update!  I will be there August 17 and am really looking forward to seeing the new facility.

Lori

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Started Vanderbilt protocoli 1/9/08  Rifampin twice a day, azithromycin MWF, Tindamax for 7 days out of a month at 250 mg three times a day,  b12 injection monthly NACi daily, DHA, calcium pyruvate, prilosec, low dose naltrexone 4.5 mg

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Caffeine is working for me.

Submitted by katman on Fri, 2009-07-17 19:38.

Caffeine is working for me. The combination of the five abxi every day (except MWF for Azith) combined with caffeine pills is like a pulse day. I pretty much lived on coffee and cigaretts for 29 years, but with this protocol when I have my morning coffee I feel yucky an hour later. I didn't realize what was causing it til I tried caffeine piulls, took a whole one (200 mg) and felt horrible all day. Now I am taking 1/4 of one at a time.

 Rica

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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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Thanks Norman, that's pretty

Submitted by notasperfectasyou on Fri, 2009-07-17 21:12.
Thanks Norman, that's pretty much Sriram's explanation in regular words.  Please clarify, It's both Azith and Rifampin that are attacking the replicating stage, yes?  NACi is for EB'si.  Ken

___________________________________________________________

In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

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Correct.

Submitted by Norman Yarvin on Sat, 2009-07-18 00:07.
Correct.
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Kim, so I see that Wikipedia

Submitted by Sarah on Sat, 2009-07-18 07:45.

Kim, so I see that Wikipedia is yet again wrong about something!  Well, I guess that's what happens when anyone can add anything.

http://www.energyfiend.com/caffeine-content/mountain-dew

As for "uppers" David's was caffeine pills when at University.  Mine was language tapes playing quietly in my ear.  It would take my mind off what I had been revising but enabled me both to remember it and improve my language skills...............Sarah  

An Itinerary in Light and Shadow

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

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Thanks Norman, so this

Submitted by notasperfectasyou on Sat, 2009-07-18 16:59.

Thanks Norman, so this implies that if you're on Rifampin 2x/day then you ought to be able to have coffee whenevery you want, yes?

 

Sarah, you're saying that listening to quiet language tapes keeps you awake?  I just need to see if I'm reading that right.  Ken

___________________________________________________________

In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

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No, I would sleep right

Submitted by Sarah on Sat, 2009-07-18 17:21.

No, I would sleep right through but both remember a lot of it and remember what I was revising before going to bed.  Multitasking!...............Sarah  

An Itinerary in Light and Shadow

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving and no relapses since starting. EDSSi was 7, but now it is not much at all.

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No, rifampin doesn't last

Submitted by Norman Yarvin on Sat, 2009-07-18 21:12.
No, rifampin doesn't last long enough. (It has a half-life of something like three hours.) If you drink coffee while your rifampin levels are low, the bugs may come out and play, rather than coming out and dying.
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That's interesting.  The

Submitted by notasperfectasyou on Sat, 2009-07-18 22:25.
That's interesting.  The half life of Azithromycin is about 2.5 days, so if you're on Azith, maybe coffee is ok, especially on the day you take it, would that be logical?  I did not know the half life of rifampin was so short, I wonder why we wouldn't take it more often?  Ken

___________________________________________________________

In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

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The dosing schedule of

Submitted by Norman Yarvin on Sun, 2009-07-19 02:12.
The dosing schedule of azithromycin that we use is intended to have it at a sufficient level all the time. But whether that level is really enough to kill Cpni which has been awakened by coffee is another question, and one which I don't know the answer to.

As for why we don't take rifampin more often, it's a bit hard on the liver; and it might be that it's the peak concentration which matters the most for killing bacteria.

In any case, my own approach has been to take rifampin, niacini, and lots of glucose (which I figure probably has about the same effect as pyruvate), and to time the doses so that all three reach peak concentration at about the same time. At other times of the day, I avoid eating large amounts of high-glycemic-index carbohydrates.

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Here is a link to my post

Submitted by notasperfectasyou on Mon, 2009-07-20 15:44.

Here is a link to my post about our visit to the Vandermall.

Ken

___________________________________________________________

In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

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