Autoimmunity and where do I go?

Okay, someone who is apparently very knowledgable approached me recently with the view that my lack of progress and slow decline over these last almost 4 years on the protocol, has been due to true autoimmunityi.  I don't know how to know what to do or how to test the thesis other than to take the advice that I've received.  What is that advice?  It is this...

Discontinue all antibioticsi except for 1, Rifampin.  Then, begin taking 1 caffeine pill of 200mg/day, split in half with half in the morning and the other in the evening.

This advice on it's face sounds ludicrous to me.  However, the person giving it to me apparently is in a position to know what's really happening, in theory.  I know this person has posted a lot here and has made some good comments at different times.  What I don't know is whether to listen to this suggestion, effectively stopping treatment.  Not that it's worked, from my perspective, but still, it has been the only thing I could do to make any difference.

So I'm olost with what to think, lost with what to do and where to go.  I'm lost and need some advice.

What

Comments

  John, thank you very

  John, thank you very much.

    yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

  John, I hope that you

  John, I hope that you have CCSVI and after correction you will start to progress. I need your help for the e-mail adress of Dr. Dake's asistanT; Alex. I hope to consult Kerem's venous drainage results with him after having them.

  yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

hi yilmazI got the address

hi yilmaz

I got the address off of one of the CCSVI threads over on http://www.thisisms.org <

I wrote to the person listed as his assistant but I haven't recieved a reply yet and don't know whether the address is any good.  If I get a reply, I will send you the address so that you have it too.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

An update of where my

An update of where my thinking is at this point.

I believe that the information about CCSVI is a symptom of the infection caused by Cpni.  However, relieving the condition by having angioplasty or stents inserted is something I want to do.  I believe that the lack of sufficient blood flow around the brain may be why I haven't progressed more.  It might be why abxi drugs haven't made a more dramatic difference for me.  The higher concentration of Iron that may be present due to CCSVI may be providing ample supplies to keep the infection going in the brain.

So, I am taking steps to get tested and to send the test results to Dr. Dake at Stanford to analyze/examine, in the hopes that if I have CCSVI, that I can get in and get it corrected.

While doing all this, I plan to continue CAPi.  I believe that it will be important to provide more abxi to the brain once the blood flow is restored, killing whatever might be present.

In order to move forward with this plan, I've contacted several people by email.  My doctor, Dr. Dake's assistant Alex, and two people here who have already done it.  I am optimistic that having the procedure done combined with CAP will get things moving again in the right direction.

I have thought about going and seeing Dr. Sriram but when I weighed the choice of seeing him or getting CCSVI done, I decide that the latter is the path that is more likely to make a difference.  While Dr. Sriram is a good doctor, I'm sure, the information about the CAP is not generally unknown to other doctors who specialize in infectious disease or medical microbiology.  While he might have something that I could try, a path I could take, I've already been on the path that two other doctors have devised, Dr. Stratton and Dr. Wheldon.  Something else is going on, either a different infection or CCSVI.

Thank you all for helping me to sort everything out.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Hi John, I second some

Hi John, I second some comments on here. One is to switch to minocin, smaller molecule better brain penetration. Don't give up. Also what about adding a low dose steriod to get the inflammationi down so that the abxi can reach the targets. Maybe going to Vanderbilt would be the best thing to do. Caffeine can't hurt. Its easy and cheap. Caffeine seems to be active against many things including, some virus and also is liver protectant. Not to mention 6-8 cups a day might stave off ms, and alzheimers. Many more articles out there these are just a few. http://www.usatoday.com/news/health/2006-11-05-caffeine-alzheimers_x.htm< http://health.usnews.com/articles/health/healthday/2008/06/30/caffeine-c...< http://vir.sgmjournals.org/cgi/reprint/50/2/429.pdf< http://sciencelinks.jp/j-east/article/200010/000020001000A0222239.php< effects-of-coffee-consumption-against-the-development-of-liver-dysfunction-a-4-year-follow-up-study-of-middle-aged-japanese-male-office-workers http://www.ncbi.nlm.nih.gov/pubmed/17090115< http://images.katalogas.lt/maleidykla/act34/A-185.pdf<

200mg doxyi daily, 500 zithromax mwf,flagyli 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Hi John, Here is some more

Hi John,

Here is some more advice/heresy for you... quit working out. I know on the surface that sounds pretty crazy as everyone knows that exercise is good for you but in the short term it may work against you.

I believe Cpni is induced into the persistent state through depletion of energy. In this state it produces harmful inflammatory proteins. I think metronidazolei induces this state as Cpn creates efflux pumps to try and eliminate it and these pumps use a lot of ATP when operating. Exercise probably induces persistence through using up excess cellular energy. Lots of other things that are not good for you may too, like fasting (reduces glucose levels) or ingesting alcohol (Cpn presumably attempts to pump it out). Also Cpn probably attempts to pump out most antibiotics, which is why less may be more.

- Paul

Paul           

Paul           

Compared to where I was just a couple years ago, I have quit working out, for the most part.  When I started CAPi, I was going to the gym roughly 12 hours/week.  Now, I don't go to the gym but only use a cardio machine I have at home or I work out in a fitness center we have at work.  The combined amount of time I spend to do that is roughly 2 hours each week, less then 1/10th of what I was doing before.  My mobility has declined significantly since I stopped working out more.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Hi DW, "caffeine has been

Hi DW,

"caffeine has been shown to be bacteriostatic to Cpni"

I'd like to see evidence, please. In the realm of science faith is not enough.

The preliminary results seem to support that caffeine is bacteriostatic. If you want some specific numbers contact me or Dr S. And although caffeine appears to be bacteriostatic, I do not believe metronidazolei was ever shown to be bacteriostatic or bactericidal to Cpn. But I have "faith" that it is... ;)

- Paul

  John, I know you are on

  John, I know you are on CAPi for 3 and 1/2 years and what I try to say is just'' you should decide whether to stop it or stay on it.''

  Dr. Sriram should have some explanations for your unresponsiveness to CAP and may help you to make your decision about CAP.

  ''I'm going to work towards getting checked for CCSVI, and if I have it, get it taken care of.'' I'm totally agree with you on that.

  And peripheric neuropathy. I think I have difficulty on expressing myself truely on this. I was looking like a very healty man with no neorological disability before NACi test, but after NAC test I had peripheric neuropathy in both of my arms, I couldn't use my arms and hands for a while. Prescribing a drug or using pc mouse was a very difficult and tiring work for me at that times. I got that peripheric neuropathy because my ulnar and median nerves were infected by CPNi, when used NAC, EBs on my nerves started to die and my immüne system realized the existance of CPN, reacted against EBs and this was ended up with demyelinationi of ulnar and median nerves. At that time, it was impossible to differantiate whether my complaints were due to peripheric neuropathy or a central disease like MS or ALS. MRI and EMG helped to diagnose.

 When we talk about your situation; you don't have any MRI or EMG after starting CAP. So we don't know whether your increased complaints are due to MS progression or peripheric neuropathy caused by CAP. So before getting a new MRI and comparing it with your last MRI, you shouldn't stop CAP. Even you find a CCSVI and treat it, you should continue CAP because CCSVI might be caused by CPN.

  yılmaz

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Sarah and DW, Before I even

Sarah and DW,

Before I even go back and catch up with the rest of this, please remember that ";)" is known as an emoticon. Specifically this one is a wink and a smile. These things sometimes get missed, particularly by people who have real lives and do not spend 8 hours a day texting their BFF... ;) <- Please note the wink/smiley inserted at the end of this sentence.

- Paul

   John, -You are already

   John,

 -You are already on rifampin and coffeine with additional antibioticsi with no appearent improvement, do you think stopping all other antibiotics would solve your problem with the cost of resistance?

 -Stopping metroi,NACi and amoxy for a while and going on others(coffeine+rifampin+azythro+doxyi) could decrease die-off reaction (you never complain about directly) and might help you maybe, but do you think that would solve your problem?

 -You should decide whether to go on CAPi or stop it. So;

  -an appointment with Dr. Sriram would be your best choice.

  -If you can't do that you should try to be sure about your MSi progression.( Feeling worse or increased neurological disability doesn't necessarily mean that your MS has been progressed.(Dr. Ayşe feel very bad for a long time but her last MS plaque, which was looking like active, was disappeared on new MRI).There may be some other explanations including peripheric neuropathy (demyelinationi of peripheric nerves caused by immunei reactions against CPNi infecting peripheric nerves) which may explaine increased neurological disability. It would be impossible to differantiate peripheric neuropathy from MS clinically, without MRI or EMG.

 So if I were you, I would go and take a new MRI (and if there is no new plaque) to see whether MS has progressed. I would give my decision after that.

  yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Ylmaz -You are already on

Ylmaz

 -You are already on rifampin and coffeine with additional antibioticsi< with no appearent improvement, do you think stopping all other antibiotics would solve your problem with the cost of resistance?

No, not at all, which is part of why I posted this blog entry, to see what others thought about it.

-Stopping metroi<i<,NACi< and amoxy for a while and going on others(coffeine+rifampin+azythro+doxyi<i<) could decrease die-off reaction (you never complain about directly) and might help you maybe, but do you think that would solve your problem?

Again, no, not really.  I do notice, however, that my symptoms (which I might not write about but do have) do get worse after taking abxi in the morning.  I take amoxy and get bad...slowly get better, then worse after abxi.  This entire thing has made me take a long, hard look at myself and how I respond.  While these symptoms aren't usually enough to prevent me from functioning day to day, they do have that effect sometimes.  Usually after I've worked out the night before, so I think it's likely not the drugs but that I don't have the sort of recovery I used to have after working out.

-You should decide whether to go on CAPi<i< or stop it. So; 

I've been on CAP for 3-1/2 years or haven't you noticed that I've pulsed 39 times?   Maybe you're just saying I should decide whether to stop it or stay on it.

-an appointment with Dr. Sriram would be your best choice. 

Maybe.  Dr. Sriram has no magic wand so I'm not sure what else he can do at this point.  I think, for now, I'm going to work towards getting checked for CCSVI, and if I have it, get it taken care of.  I think that it's very likely the reason why my progress has been almost non-existent and I've mostly declined for the majority of the time I've been on CAP.  If the blood can not flow around my brain, and the infection is lodged there, I can't clear it if the drugs can't get to it and Cpn is concentrated there.

-If you can't do that you should try to be sure about your MSi< progression.( Feeling worse or increased neurological disability doesn't necessarily mean that your MS has been progressed.(Dr. Ayşe feel very bad for a long time but her last MS plaque, which was looking like active, was disappeared on new MRI).There may be some other explanations including peripheric neuropathy (demyelinationi<i< of peripheric nerves caused by immunei<i< reactions against CPNi< infecting peripheric nerves) which may explaine increased neurological disability. It would be impossible to differantiate peripheric neuropathy from MS clinically, without MRI or EMG.

That, peripheric neuropathy,  has been ruled out twice.  My symptoms don't follow that prognosis but follow M.S.  I have had an MRI done, twice, to confirm the diagnosis.  These were years apart with the last done shortly before I started CAP.

 So if I were you, I would go and take a new MRI (and if there is no new plaque) to see whether MS has progressed. I would give my decision after that.

I may do that; however, before I do that, I want to get an MRV and CCSVI checked out.  That's the next step for me, I think, unless anyone can give me compeling reasons to go another direction.

 

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Switching or rotating drugs

Switching or rotating drugs is something I have thought about and discussed with my doctor last summer.  I'll talk to him about it again.  At the time, I was thinking of minocycline and biaxin, though switching over to both might be overkill.  Maybe just one or the other.

Also, I think I will begin adding back the INHi when I pulse.  I only did that for 2 months last year and stopped it after having what I thought was inflammationi that slowed me down a lot.  It might have also been the combination with Calcium Pyruvate, that I also tried about the same time.  I've stopped both but adding back INH while pulsing might be a good addition.  1 dose in the morning should be all that's needed.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

PLEASE, PLEASE, PLEASE

PLEASE, PLEASE, PLEASE consider rotating an abxi. like you said, what else do you have to loose?  Stratton talks about CPNi not being just one strand, but different strands. maybe you have a strand that is not responding to doxyi or azith.   Maybe your CPN has developed resistance to these abxi.   have you been checked for Myco? Myco causes auto-immunity.  Myco, from my reading, responds to minoi and erythromycin......

 i'm not a medically trained person. but I know from my experience that rotating abx really packs a punch. I was on the protocol for 1 1/2 yrs and switched from doxy to mino and this kicked my ass. it took me full 6 weeks to work up to 100mg 2xday and not  experience and side effects. dont know why I experienced porphoyria with this changing but I did. One day the porphoyria was so bad, I threw up.

I was on the protocol for 6 mnths on doxy and azith and then all of sudden started declining. I switch to clarythromycin and started feeling better. It took me few weeks to work up to 500mg 2xday without side effects.  

 

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

"In fairness it is not their

"In fairness it is not their [microbiologists] fault as they have had the disadvantage of years of creativity stifling education and further years of mind numbing conventional wisdom working against them."

 

Oh. We have sunk to the level of the ad hominem attack eh? The old ones are the best. If you can't give evidence for your argument, assault your questioner. Though not strictly a logical fallacy it is generally regarded as such. It is also peculiarly childish.

 

My creativity-stifling education allowed me to write four published philosphical novels. Here's one review of a novel entitled The Course of Instruction. By coincidence this novel is a story of the interpretation of evidence:

 

‘Memorable surrealist scenes. . . but the book's real excitement is that, like a Kafka novel, it invites a continuous succession of interpretations. We surround all our experiences, David Wheldoni seems to say, with unjustified assumptions, but without these we are lost. So Alexander is lost without the course which he expected, or when the servants do not behave like servants. Such an interpretation only scratches the surface of this strongly recommended novel.’
Thomas Hinde, The Sunday Telegraph

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

  "Those microbiologists

 

"Those microbiologists are the toughest to convince... It probably took another one I know a couple of years to get on board ;) In fairness it is not their fault as they have had the disadvantage of years of creativity stifling education and further years of mind numbing conventional wisdom working against them. Anyway try and be patient as just as with H. Pylorii, this will take a while for them to adjust... ;)

Sarah, I sincerely hope this does not come across as too condescending or offensive in any way... I am just feeling too good these days not to mess with people ;) Anyway keep up the great work in helping people."

Paul, anyone would think that you are the "certain person" who contacted John.    
    
I'm afraid that what you say above comes across as very condescending and even offensive.  I will agree that some medical people, not just microbiologists, have the disadvantage of creativity stifling conventional wisdom working against them, but education, no.  Where would we be without medical education? I'll tell you where: we still would not have the evidence that many illnesses are caused by bacteria and viruses to start with, but by a miasma coming out of the swamps and suchlike.    
    
My personal microbiologist is the most creative person I know which is very unusual for someone well into middle age.  He won't claim anything unless he has the evidence to support it, though.  Nobody should........Sarah    
    
John, you are feeling much more positive today!!    
    
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 bit by bit and no relapses since finishing treatment.

Everyone, thank you so much

Everyone, thank you so much for the feedback and advice you've provided here.  I needed to really think about the advice I was being given, as it didn't seem consistent with what I already knew about antibioticsi and restistance from bacteria. 

Rifampin alone is probably the one antibiotic I would be least likely to use alone, least likely to try to use that way.  The drug has the longest history in the medical community of all of the antibiotics we take, I believe, though there may be more history with the penicillin drugs.  I'm unsure of the exact dates of things, just that I know from the extremely helpful information provided by Dr. Wheldon and Dr. Strattonl, that using Rifampin alone would be a bad idea. 

I did look for evidence of Caffeine having some sort of antibiotic effect on PubMed but came up with very little, all of which appears to be irrelevant...

http://www.ncbi.nlm.nih.gov/pubmed/18650803?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=16<

http://www.ncbi.nlm.nih.gov/pubmed/18522283?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=18<

http://www.ncbi.nlm.nih.gov/pubmed/18001036?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=27<

http://www.ncbi.nlm.nih.gov/pubmed/17090115?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=46<

The latter two articles do show that caffeine has some antibiotic effect...but...against unrelated bacteria, certainly not intracellulari bacteria like Cpni.  Which begs the question that if caffeine did have an effect on Cpn of any sort, why would that not be discovered decades ago, presumably against other chlamydias?  It's such a common compound that surely someone would have thought about it and discovered it's affect some time ago.

I did see studies about something I wasn't looking for.  The studies talked about Rifampin reducing the plasma concentration of caffeine and other drugs, which makes me wonder if it would potentially have that effect on antibiotic concentration in the blood and intracellularly?

Okay, the latter question is a tangent on why I posted this blog entry.  I'm not planning on stopping Rifampin, though I am planning on talking to my doctor about all of this on December 31, in person, or sooner by email.

Thanks again!

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

"caffeine has been shown to

"caffeine has been shown to be bacteriostatic to Cpni"

I'd like to see evidence, please. In the realm of science faith is not enough.

 

Lala: Please come to London and rescue my head if that ever happens. Kafka - one of my literary heroes. http://www.davidwheldon.co.uk/firstencounter.html<

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

There is definetely

There is definetely something going on with Caffeine in terms of provoking die-off reaction.  Combination with the protocol makes it pretty much clear. I also noticed that while having some intensified reaction to abxi after drinking one liter of diet coke.

 What is even more interesting I have a much stronger die off reaction adding Taurine to it. Concluding, there is no doubt caffenie intensifies die-off reaction and what is even more noticable it works synergisticaly with Taurine content.

 

CFSi, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

John, suggestions to see the

John, suggestions to see the docs at Vanderbilt are good ones. Also, I have always thought you were suffering from a lot of inflammationi. What ever you do, you have some very good and knowledgeable folks here giving advice. You will have the wisdom to listen and make a decision in your best interests.

Hang in there,

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Aren't I embarrassed!  I

Aren't I embarrassed!  I seem to have missed the entire point of this thread.  Given that, it makes sense to me that rifampin alone, any of the antibioticsi alone, isn’t going to have the desired outcome.  There’s a very good thread here about folks changing the protocol …….. TADA!

 

Are you really sure you tried the Stratton/Wheldon protocol?
<

I can work that search tool!  Thanks for the memorable post Ron.

So given that, I happened to have hit an article today that sorta shows that Rifampin has limits on what it can do with Chlamydia Pneumoniae ....... 

Fischer, Silke et al. 2001 Characterization of Antiapoptotic Activities of Chlamydia pneumoniae in Human Cells<

Maybe not the best article, but an interesting one nevertheless.  Enjoy!!!! Ken

ps. I don't know why the colors and fonts look all goofy in this post, but it looked normal when I typed it and just editted it.  Psychadelic!!!  

<

In pursuit of ABX<

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

As regards: "caffeine has

As regards:
"caffeine has been shown to be bacteriostatic to Cpni"
is this a new development since last week, when in the caffeine thread you were saying that evidence for caffeine's effects was still pending? Or is this something we could actually read about, in a journal somewhere?

By the way, if this coyness is the result of trying to not reveal results ahead of formal publication, then, to pass on a piece of advice, "Don't worry about the world trying to steal your ideas. If your ideas are any good, you're going to have to ram them down the world's throat."

Hi Lala, I agree that all of

Hi Lala,

I agree that all of this is experimental. But I disagree it is a good idea to go the "safer" route. We believe that many of of the side effects and progression of various diseases are a result of Cpni's production of inflammatory proteins. Since resistance to antibiotics can induce the production of these proteins, the idea is to minimize this and focus on just what is necessary to eradicate the infection. And as I stated before, this is neither fast nor easy but appears much faster and easier than any other approach.

Please keep in mind that there are multiple types of resistance in Cpn. The primary mechanism it uses is via producing efflux pumps that remove toxins. The rarer type of resistance stems from mutations that allow it to bypass a process that an antibiotic interferes with. These are not mutually exclusive either. The longer you let an organism "hang around" via its primary mechanism, the greater the chance it will develop resistance via the secondary pathway. In any event at the present time, resistance through mutation is not the greatest concern.

- Paul

Paul, I think, you can be

Paul, I think, you can be right. We simply do not know, but John is not in the situation when he can experiment very much without great fear about serious consequences. I think why not trying coffein, but it is much safer to try with combination of antibiotic and not only one, isnt it? All is still very experimental. Is there any problem like that therapy decreses effectiveness with combination or that it is much harder to use? I do not think so.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

Ooooh, I see black ravens,

Ooooh, I see black ravens, eating your dead head, DW. How disgusting! :( You would better prescribe doxyi and azi unless you want Franz Kafka to be jealous of such morbid picture from the other world! :o) /sorry for bad English/

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

Hi Sarah, Please trust me

Hi Sarah,

Please trust me when I say this: I am married to a microbiologist and he is not the only one I know. This person is obviously not a doctor or he wouldn't have suggested such a course for you.

Those microbiologists are the toughest to convince... It probably took another one I know a couple of years to get on board ;) In fairness it is not their fault as they have had the disadvantage of of years of creativity stifling education and further years of mind numbing conventional wisdom working against them. Anyway try and be patient as just as with H. Pylori, this will take a while for them to adjust... ;)

Sarah, I sincerely hope this does not come across as too condescending or offensive in any way... I am just feeling too good these days not to mess with people ;) Anyway keep up the great work in helping people.

Best regards,

- Paul

Hi DW, I guess you never

Hi DW,

I guess you never treated anyone with TB... ;)

Seriously... although TB is always treated with a combination of drugs, none of the ones typically used aside from rifampin has been shown to be bactericidal. And before you pull the bacteriostatic card... caffeine has been shown to be bacteriostatic to Cpni ;)

- Paul

A small footnote.  Were I

A small footnote.

 

Were I to be found prescribing rifampicin alone I should be taken to the Tower, have my head removed from my body and stuck on a pike on the top of Temple Bar.

 

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

We're not exactly ganging up

We're not exactly ganging up on you, John, but ....Do you want us to put in a special request to your boss who sounds like a good guy?  Something needs doing here and you are elected.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Do NOT take rifampin alone.

Do NOT take rifampin alone. Do not discontinue treatment on your own. See Sriram and present him with your information. I'd bet he'll be fascinated by the puzzle you present and will have some critical insight.

 We tend to forget that most here are just laymen, regardless of how well we've self-educated on the topic of cpni. Stop risking your future and go see Sriram.

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

I agree with Norman here,

I agree with Norman here, carry on with doxyi and/or azith together with the rifampicin.  No doctor, unless they were stupid, would prescribe rifampicin by itself.  Caffeine doesn't count in this case. Doxy and azith are immunomodulatory so you will feel worse if you stop both of them.   
  
Autoimmunityi can result with some people if they have had MSi for a very long time, but rifampicin and caffeine is not the answer......Sarah  
An Itinerary in Light an Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Clearly put, Norman. The

Clearly put, Norman. The immunomodulatory (frankly anti-inflammatory) role of doxycycline is worth thinking about. It has been found to help in inflammatory respiratory diseasei and in ischaemic stroke.
D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Autoimmunityi is definitely

Autoimmunityi is definitely a part of the disease; the mainstream researchers who are focused on autoimmunity most probably aren't studying the root cause, but they aren't studying nothing. But in the absence of continual goading from pathogens, autoimmunity generally tends to decay. In your case the continual goading would be largely a result of the metronidazolei pulses: they're the ones that do most of the killing of Cpni (which exposes it to the immunei system, activating it). So this is another reason to give yourself a break from pulsing. It's not a reason to stop taking antibioticsi completely, though; the doxycycline, azithromycin, and rifampin keep the germ from replicating, so going off them would likely make you feel worse rather than better.

John, I second Sarah in

John, I second Sarah in persuing a consult with Professor Sriram.  Then your local provider will have input to follow from someone specialized in approaches for your situation.   Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

John, I am going to come

John, I am going to come right out say that you should not do what this person recommends: he is correct on one thing, which is the keeping on rifampicin because resistance will follow on stopping and restarting it.   
   
However, there is one other thing about rifmpicin, which is that it should never be taken as a sole antibiotic again for reasons of resistance.  In the UK it is used as a front-line TB drug, but never by itself.  For this INHi is commonly used as the second drug.   
 
Please trust me when I say this: I am married to a microbiologist and he is not the only one I know.  This person is obviously not a doctor or he wouldn't have suggested such a course for you.  
  
So, what to do? You could try treating our MSi as someone might treat TB, but in my opinion the best idea would be to make an appointment to see Professor Sriram but definitely don't listen to ideas which might cost you dearly in terms of your health.............Sarah 
  
An Itinerary in Light an Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi John, is it problem to

Hi John, is it problem to make a compromise and take rifa together with azi and coffein? I agree with Rica, but would be afraid about resistance too..

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

John,Just because we

John,

Just because we determined that it might not be blue don't necessarily mean that it's yellow.  I don't know about the black and white analysis you're being presented with, but it's making assumptions that you need to question. Always be attune to identify assumptions and then question them.

I wrestle with the thought of true autoimmunityi from time to time.  I posted a lot about it and believed it before learning about CAPi.

Would I act on it today?  No.  But that's me.  Kim might feel different and I would respect that.  If I was looking at this ..........

This is so dang speculative, I think I'd really go over all my abxi stuff really carefully and see if there's stuff I might have missed.  I'd hedge my bets and learn about some other therapies like LDNi and CCSVI.  Learn means learn and read and study and consider just as deeply as you have considered abxi.

I also think it might be important to be on abx and not just drop it cold.  The thought of just dropping it at once conjures up scary thoughts.  But, I really don't know. Maybe I'd try to get an appointment at Vanderbilt. I'd consider mis-diagnosis.  Have you read The Differential Diagnosis of Multiple Sclerosis<? It's a very good and potentially enlightening read.

This is a very difficult question and I respect it's significance.  I hope some of these ideas might be useful.  Ken

 

 

 

In pursuit of ABX<

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

Hi Sarah            

Hi Sarah                             

Yeah, I'm right there with you, not knowing whether it's a good idea or bad.  I've been on the protocol for approaching 4 years in April, so it's not like I haven't been sticking to it.  I know you and Rica aren't inferring otherwise, I'm just thinking about it, virtually out loud.

So given that resistance with Rifampin builds up so easily and I wouldn't be using a combination, wouldn't that be risky to do...going on just Rifampin?  I would continue NACi and the supplementsi as those aren't having the same impact as the abxi, except on EBs, in theory.  I've been one of the people who started on amoxycyllin just this past July as I wasn't confident NAC was really doing what it was expected to do.  It did at first, quite dramatically, but over time, it's been much less efficacious from a reaction standpoint.  

I did have reaction to amoxycyllin when I first started taking it and with my first pulse using it.  That pulse was painful.  Subsequent pulses had little or no pain.  I think the second one had slight pain at first but quickly disappeared.  Everything after that, nothing.

So then that begs the question of whether there is or isn't anything left to catch with abxi?  I have no way to know, that I know of.  All of the efficacious tests aren't available to the public yet, as far as I know.  The tests I have had all showed negative every time for Cpni, though I haven't had one since beginning the CAPi.  Maybe I should?  Is there one that is available here in the U.S.? 

Well, I do appreciate the advice that you, Rica, and this person are offering me.  Seriously, I need it and appreciate getting it. 

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

I can't comment on the

I can't comment on the advice you were given about changing the protocol you have been following, but I can tell you about my own experience.  After doing the CAPi for about a year, I "hit a wall" and stopped having any reaction to the pulses. 

Based on the comment in the CPni Handbook (in the section entitled "Dr. Stratton Responds to Some Questions") that said:

"By the way, the most potent combination (in the original studies described in the patent materials) was metronidazolei, INHi, and penicillamine (NACi does the same thing.). My thoughts would be to pulse INH along with the metronidazole, starting slowly (1 pill at a time) so as to reduce the side effects. As long as you are also taking NAC, the metronidazole/INH pulse should root out Cpn very effectively."

I decided to add INH to my pulses.  After all, what did I have to lose except my liver?  It made a huge difference.  The difficult pulses returned almost immediately and I was sure I was making progress once again.  

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

  Crumbs, I don't know what

 
Crumbs, I don't know what to think. 
I do think that you have been taking the other abxi for long enough to be able safely to stop at least for  while, but this person maybe says to keep on rifampicin because resistance builds up easily with it if you keep stopping and starting it.
As Rica says keep your D high and I would say B12 as well, plus of course, the other supplementsi so you don't get too much of a shock to the system..............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 bit by bit and no relapses since finishing treatment.

No, John, I can't think of

No, John, I can't think of it as giving up. Besides all the reasons for not stopping Rifampin, I am not certain how resistance works, but you will still have a breather and not give it an open door. Enjoy the time.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica, thanks for the

Hi Rica, thanks for the feedback.  It just seems like giving up to me.  Plus, if stopping the other abxi, why keep Rifampin going?  Without a combination with other abxi, that seems like a self defeating profecy.  No abx for EBs, no abx for CBs, and Rifampin only for RBs.  It's puzzling.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

JohnYou have tried very,

John

You have tried very, very diligently to do this right.  I have been completely baffled at your lack of progress.  We have some ghosts here with lots of knowledge who know more about this than you or I.  It seems to me that continuing the Rifampin (and I assume the supps), will continue the battle and allow your body a chance to show any progress that may have been masked by the constant onslaught.  You probably have little to lose, and mayber lots to gain.  Keep your D3 high.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

What do you think I should

What do you think I should do?

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day