Vanderbilt abandons Vanderbilt Protocol?!?

Visited the Vanderbilt MS Clinic recently, and discovered they have gone over to the "AMA dark side"... they no longer consider treating CPn with CAP as a treatment for MS!?! (ie - into the avonex, etc. crap)

(AMA views this MS treatment as junk science, typically because they abuse antibiotics rather than understand them... going over to their "dark side" means giving up and 'complying' with AMA standard of views on medicine, rather than following scientific methodology)

Did manage to convince them to give it (Wheldons version for MS) to me for two years, though ;-)

Starting the vitamin/suppliment recommendations for now while I await my first month's mail order supply of antibiotics. First monitoring tests in two months.

Doxycycline-Azithromycin-Metronidazole

Oh right, so according to the AMA I got better with being treated with ‘junk science’ Who did you see at Vanderbilt?  I think there only ever was Sriram who used this, all the other neuros stick with AMA beliefs.  Well done for getting two years of treatment though!................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah wrote, "...so according to the AMA I got better with being treated with ‘junk science’"

Yea, well that's about the size of it. 

It's just like my neurologist who looks at the progression of my M.S. (or I should say my lack thereof), asks whether or not I'm taking antibiotics and still dismisses me as nothing more than an anomolous data point; a statistical chimera if you will.

 

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Who did you see there ?

 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly

Also, Batgirl,  will you keep a thorough journal as you go through this protocol?  I found it to be helpful when I did.  Note all your symptoms at the beginning, note each med as you add it and note each improvement as you have it.  This will help for two reasons:  1) to show yourself that you are experiencing changes and 2 ) convince Vanderbilt docs to return to the protocol if they see that a patient improves.

 

It concerns me greatly that they are "abandoning" it.

 

Thank you

 

 

 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly
D W

The idea of a primary autoimmune disorder is perhaps the bona fide junk science.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

DW, Somehow, I knew this intuitively when the neuro explained my body had suddenly and for no reason, turned on itself and started chewing on its own myelin.  It made no sense then and it makes no sense now.

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

so, they put me on the following:

Doxycyclene 100mg daily (M-Su, 365...)
Azithromyacin 250mg 3x per week (MWF)
Metronidazole 250mg 3x per day for 7 days per month (le pulse)

vitmins/supplements: multi-vitamin (food based - horse pill size...), vit. E, milk thistle (liver function), Vit. D3, vit. B12, Q10, lactobacillicus, creatine, kelp (iodine), and NAC of course.

Also - following the BTD (blood-type-diet) as close as I can, considering I'm type O+ secreter and a vegetarian...

so far, the only problem is the 8oz water w/each ABx... if I try to swallow the pill and then gulp down the water, I get nausiated and upchuck :-\
....so, about 15min prior 'til about 20-30min after I just sip and it's OK.

had a bit of a problem with the Azithromyacin (besides the medicare 6 pill limit per mailorder fiasco/circus act) making me nausiated, but now wait about 15-20min after lunch to take it, and no stomach problems :-)

Just started the pulse today - doing fine so far even with empty stomach - no problem with nausia at all...

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

I'm an ovo-lacto-vegan... so eggs, cheese, wool, etc. are fine ~ you don't have to kill the animal to use their product of domestication (ie provide safety for domestic service). Some vegans won't eat anything from an animal like it was taboo or something. I try to have an empty stomach when doing ABx's... well, most of the time - much as I can manage. Had prob. w/Azithro messin' w/stomach, but tolerate it well now.

The guy at the testing center indicated the 24hr cease fire on vits/suppl/ABx's prior to test was not critical, just provides 'better' (more accurate) results...

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

As I just said elsewhere, you need to have something on your stomach when you take doxy, even if only a cracker or biscuit or bite of bread.

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

Hi BatGirl,

You seem to be moving awfully fast. Exactly when did you start on the antibiotics?

Phil

 

__________

Mother has probable Cpn infection, may also have Lyme Disease. Not on CAP yet.

 

 

third day of my first pulse going fine so far (first day of CAP was May 16, 2014....)

I have RRMS - my hands numb - loss of dexterity (can't use pencil/pen... typing with one finger of right hand... left handed, but tremors in left one and it's worse of the two hands). left side of lips/tongue/chin numb (known to drool on that side...). numb spots all over torso/arms. don't sweat on upper left quadrant of body (torso, arm, head - turn into two-face if in sun too long, left side goes into heat stroke with white skin dry, while right side goes into heat exhaustion with red and hot and wet - actual line of demarcation down the middle of my face/nose/chin... weird!). the usual fatigue, too. Legs fine - walk a kilometer daily. Occasional 'lightening' seen in outer edges of vision - gotten less...

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Finished first pulse yesterday - the whole month went much better than I imagined, but it was only the first..

Did develop a bad lower lumbar/hips area ache that started a few days before the pulse, but as the pulse went on it got better and better day by day - could this be some side effect or would it be unrelated?

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Any chance you had an old injury involving your lumbar/hips area?  My old back injury flared up HUGELY once, in the first year of the protocol, then steadily improved. 

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

Finishing second pulse tomorrow, this time my left chest (from the VATS pleurodesis scar tissue?) developed some bad pain going into the pulse. It finally left as the pain/stiffness went into my shoulders/neck, while this nasty cream colored stuff got coughed-up for the past few days... cleared up now - just mild toilet yucky stuff for the time being. Gonna be getting blood/liver function tests done hopefully during next week. Probably got a mild case of active CPn, judging by the pains and all the goo coughed up.... 

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Did have crushed disc on third lumbar as a teenager, but last xray (after years of my inversion table) has the doc's saying the disc appears to have never been damaged (ie - full recovery, can't tell it was even injured...). But no injuries to the hips that I can remember...

Anyway - anyone know the relivance of my CPn IgG being 1:512? (other than being higher than the threshold of the 1:16)

Backache has almost completly left... seems replaced by the most awful nasty stuff coming out during bowel movements. Everything from soft stools to full flow gushing! Weird slimy green crap, etc. Guess this is the die off from my first cycle, eh? Not too bad I guess :-]

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Batgirl, I bought an inversion table too, but my Chiro insisted I not use it. So interesting to see that it helped you.  I have an inverted C-spine. So I wonder how inversion would help that. Glad it worked for you though!

 

Julie

MS: First sx '93 dx '09 no obvious relapses just steady decline since '07. Crippling fatigue, too weak to sit up for extended periods of time. Cane/walkers/electric chair inside, helicopter outside. 

Started protocol 11/16/13.  1200mg N

Chiropractors/Orthopedics have no incentive for you to self heal.... most know the device threatens their monopoly on your back - money drives most 'doctors', and letting you heal yourself is against THEIR interests...

fyi - I was also heading towards scoliosis, just a few degrees more curvature from being an 'official' case... but the table helped to gradually straighten it. The trick with these tables is to use them when you're well, not wait 'til you're in back pain.

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Batgirl. That is a high reading, although David has seen higher, but the girl with a reading twice as high made a full recovery.

As for the nasty stuff, you are taking probiotics every day, I hope.  Take them at least two hours apart from any antibiotics and it should cure the problem.  If yu don’t you will be getting rid of a lot more than dead cpn, and a lot of what you are getting rid of, you need to keep!……………………………..Sarah

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks, Sara... so I guess the high reading means I'm a good candidate for the CPn version of MS... and the choice to switch from avonexpen to CAP was what I thought it was... another sign from God (how I came across the vandy proto is an epic story).

The Boost Plus I use has "Prebiotics"(?), and the 'horse pill' multivitamin (NewChapter 40+ every womans one daily) is probiotic whole-food complexed (non-GMO, too). The NAC has antioxidants..

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Whatever your reading, CAP is better than avonex!...........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

My third pulse gave me pains in my right arm like nothing I had ever known before but David’s second pulse made it seem as though he had a creature inside his skin, which would suddenly run up to his left shoulder, seem to stop then suddenly come back.  Weird!  With both of us it only happened the one time, though……………………………..Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Began third pulse a few days ago... THIS time not as bad a pain, but in the right chest cavity (VAT scar tissue inflammation), again began coughing up handfulls of cream colored junk, and shoulders/neck are beginning to stiffen up as the chest pains subside... and yes, the stools are again yucky but not as extreme as the first time.

btw - liver function test came back all GREEN! (guess stopping all vit/suppl/ABx's for 24hr prior to test was OK idea... and, guy at test center said he wished all those doing tests would do this...)

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Batgirl - are you able to explain more about the thinking behind stopping abx before a liver function test?  I don't understand why we would do this.  I can understand that, if someone was on a short course of abx, testing whilst they are taking those abx might not give a true view of their usual liver function status.  But surely, when we are taking abx for years, testing whilst we are taking them would give a more accurate idea of our liver function than if we stop taking them.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11)

In the Uk everything other than immuno suppresants is considered junk science. MS specialist in S.Wales says protocol is bogus and oxygen therapy. All they care about is getting people onto drug trials so they make money and write papers to get their Profesship.

I totally agree and understand what you are saying. Medical world in Canada is also laden with many problems. PM me if you want more info.

diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,

Finished fourth pulse a dozen days ago, and a dozen days away from the next one. Feeling pretty great at this mid-point of my monthly CAP. The fourth pulse was bizzare - my left knee (where I'd injured it a couple of years ago, but only gives me occasionally a bit of stiffness) decided to just go into total crippling pain from a few days before the pulse began to a week afterwards - had to bring out my knee brace to do my daily walks (the few I could manage). Suddenly, the pain disappeared totally a few days ago, and there seems to be no stiffness...

But, I can feel the usual respratory gook beginning to get ready for the upcoming pulse... been doing this just before every pulse - starts a week to a few days before the pulse, coughing up handfulls of creamy gook ~ then this dissappears about half way thru the pulse.

btw-My only apprehension for these pulses is that all the other ABx's I take are coated, but this three times a day for a week thing is not coated, ALWAYS hangs at the back of my half numb throat (left half of lips/tounge/mouth=numb), leaves the taste from heck there, but is otherwise OK... stomach likes them. I just have to be sure when I 'go for it' and do the anxious toss as far back as I can, that I don't asperate the thing, heh, heh.

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

Sounds great. A bad taste is a small price to pay. Try tinidazole.

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

After third day of pulse #5 here, the finally anticipated "pain this time" came along - back to the lower back... and of course the handfulls of creamy gook's been coughing up for a spell again, heh, heh. Stools still weird, but less 'dramatic'...

Holding off walking the 1kilo morning constitution for a while like last time it did this. Hopefully avoid the pain spreading into the hips like that first pulse's backache did.

Also noticed my hand tremors got a bit more intense (especially left one), and more shakier then normal genrally. Energy is still up, and the supp's/ABx's are going along orderly and fine.

On the cool side, my left knee has not 'acted-up' a single second since pulse #4's drama about a month ago - NICE! And according to my dentist, my peridontal condition has gotten significantly better (doxy's doing..).

Will be doing 2nd LFT this month (predict fine as usual), and then 1st follow-up at Vanderbilt's MS Clinic in november. This time with Dr Sriram :)

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...

OK - bit of time passes...Beginning my ninth pulse in a week or so ~ pulse six, seven, and eight went by pretty mildly (mostly lower back/hip stiffness... very little bizarre stools or gook coughed up).

Getting used to the metro taste (I think throwing it to the back of my throat and trying to wash down was problem - it tries to stick to the tongue and uncoated it begins to dissolve quick before it can wash down ~ now I get a mouthfull of water, chunk it into the mouth and down it goes without much taste at all!). The doxy seems to need the empty stomach to be most effective, so I take it an hour before lunch after no food two hours before (not a breakfast person anyway). As long as for that hour after taking it I keep movement to a minimum - no nausia (alergic to the HCl in the stuff - hypersensitivity and nausia... sure wish there was a doxy version without gelatin (vegan) or HCl....). The zithro seems not to require an empty stomach.

Well, finally met the main man at the Vanderbilt MS Ctr., Dr Sriram - totally cool guy, bit awesome, too - could give me an answer without running off to consult somebody first. Seems he just wanted to see what my CPn test indicated before getting involved with me, and with the high IgG (1:512) he got me switched. Wants me to go 18 months on the ABx's...

We find consultations, we learn tricks with which we deceive ourselves, but the essential thing - the way - we do not find. Listen to the river...