With reluctance

D W
Submitted by D W on Sat, 2010-03-13 10:51

As a registered medical practitioner my professional interest is in the treatment of persons with Multiple Sclerosis. That’s understandable; my wife, Sarah, had developed a very aggressive form of the disease, with the classical frontal lobe disturbances typical of severe illness. She was given a poor prognosis. I found the work of the Vanderbilt people (the patent of Dr Stratton and Dr Mitchell) and treated Sarah with a combination of oral doxycycline and roxithromycin; I later added pulses of metronidazole, changing this to tinidazole as it was better tolerated. Supplements including antioxidants and vitamins B3, B12 and folate were taken. After six months rifampicin was substituted for doxycycline. Sarah made a good recovery following a rather stormy course. C. pneumoniae contains endotoxins and a reaction is not unexpected.

 

I began to treat other people, with quite some success. Many people need a lot of support as they go through treatment. I would recommend them to visit cpnhelp.org. At that time — largely due to the untiring hard work of Jim Kepner — it was a helpful and useful website. It was very supportive. It was reliable and largely trustworthy.

 

I’m afraid this has changed. I have had several emails and phone calls from patients who have been made worried — even frightened — by the content of some of the posts. They tell me that they have been advised to tailor their treatment, stopping some antibiotics and substituting non-antimicrobial compounds. They have been told that the treatment I have advised is likely to be ineffective. Studies have been quoted without any reference or author being given. This advice — which is highly speculative — has been given confidently by a person untrained in medicine or medical microbiology. So. What can I do but to sever the link from my webpage to cpnhelp.org? And to warn patients that the Internet is an untrustworthy place where you do not know the qualifications and the agenda of those who proffer advice?

 

You won’t see me here again. I’m sorry about this, because I feel I have made good friends, and I believe that we have done some good in helping ill people. But I do not wish to risk people harming themselves due to gratuitous advice from those not qualified to give it.

DW,

I am so saddened with this news.You remain as a "shining light" to me.Thank you for being who you are, defying medical intervention ,from those unqualified to give it. This website has been losing popularity with me for a fairly long while and I can clearly see why.

I'm merely trying to help myself. So many of us are.

Once again, thank you.

 

Loulou(Louise)

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,

Dear Dr. DW

Good people always leave first and I wish there was a way to convince you to stay with us. I really hope you will change your mind and that other people on this website will help me to do so!

You probably have no idea how many lives you saved and will continue to save and this fact is far more important than some dishonest people trying to defeat science and hope!

Thank you so much and we really need you.

 

Diagnosed with MS on March 2009, started CAP on Jan 2010. Doxy 200mg- Roxy 300mg- NAC and all major supplements.

Dear Dr. Wheldon,

Very disappointing to hear that you're leaving.  Thanks much for what you've done, your work was very helpful to me and is what persuaded me to try antibiotics -- which very effectively cleared up cognitive and neuropathic disabilities of 10-15 year duration.  I found you through this site, and I'm sure many others did as well.

I have not been following the discussions here closely lately.  Can someone give me a link to the offending advice?

Best of luck, doctor, and please stay active on the Internet. 

Paul

Blogger at http://perfecthealthdiet.com. 17-year chronic illness cured with diet and antibiotics, nearly fully recovered.

Good things dont last forever. Theres always going to be skeptics out there.  Thanks for everything and God Bless.

Fibro, CFS,  Myco, CPN, Stratton protocol, Zithro 500mg M/W/F/S, Doxy 100mg 2x day, NAC 1200mg 2x day, Flagyl and INH 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day,  Still cant shake it but improving.

 DW, It is truly unfortunate you feel your need to sever your ties with the CPN site, especially since you and Dr. Stratton were founders of treating these insidious bacteria.  Please reconsider Dr. Wheldon and don't let one or a few spoil it for the majority. 

I do have concerns with reference to your statement about your patients receiving side information... in that

IMO, the site has changed from  a site of sharing and support to one in which many are being  recruited and counseled behind the scenes by those who have self-appointed themselves as experts.  This is unfortunate because the new people lose the interaction of the real experts, everyone who is on the site, the other new people, and the others who have been there the opportunity to respond to what they are going through. 

Had it not been for the Internet and the information I found on this CPN site and the compassion of the elders who were there (Michele, Jim, Sarah, Katman, MackIntosh… and others) …. I would not have been treated, been able to handle what I was going through. This site was my only source for people who understood what was happening  and information on how to treat this bacteria.

 If you advise your patients the Internet is an untrustworthy place…..you will then fall in line with the other doctors who dismiss their patients with information and research they cull.   I don’t think you mean that statement, I hope it is only because you are frustrated with a few who post on this site.    

I, personally, would like to see this site turn back around… back to what it was created to be… a place of sharing l information and support in a non-confrontational environment.   

 Please encourage your patients to dismiss the mis-information here, that the protocol as originally developed CAN help.  Please stay with us… be our rock as one of the founding doctors.   It’s true only the good can push out the bad.....I would hate to think your disassociation could possibly discredit us as a reputable source.  

Thank you for reading this.

JeanneRoz

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Dr. D W, thank you for all your contribution. When I first found cpnhelp, I followed the link to your story. I took a basic combination of generic antibiotics for three years. My blood pressure dropped to 110/70. Thank you.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Dear Dr. Wheldon,

It is very discouraging to read that you would throw in the towel, so to speak, because of some misguided folks here. Without your influence here for the true template this website will become even more polluted with misinformation in my opinion. It truly was bad enough when JimK our amazing helper and diplomat left here. This feels to me like the fatal blow. JeanneRoz has said all else I would say much more eloquently. Quite honestly, the news is heartbreaking for me to lose your influence here.

Thank you so very much for all your generous help in the past. Your story convinced me I needed to pursue your treatment. This website has been an enormous valuable tool for countless, hopeless patients like me, lost in a hostile environment in traditional medicine.

Bless you Dr. Wheldon. I am eternally grateful to you.

Miying

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

I am angry at the loss of your input here. For some time, I was barely posting on this board for the very same reasons. Unfortunately, with JimK's attentions directed elsewhere, the site has begun to stray from its original intent, and has begun to become a platform for too many with their own agendas.

The site has fractured into 'camps': those who need to control others, those who need to vent their own opinions and undermine others' opinions, those who give questionable advice via private message (intentionally making it impossible for the greater community to address the advice and assess and clarify it for newbies). A couple of us have controlled the spammers, but it's not so simple to control egos and misinformation.

A few of us have made a point of staying here (or returning, in my case) pointedly to be of assistance to the new folks. Speaking only for myself, I feel a profound sense of responsibility to them, due to the patient and untiring help I received from the founders of this site five years ago. Had you and Sarah, Jim, Marie, LifeontheIce and Katman not been there, I'd be huddled in a ball in some rest home by now, and I don't want to see that happen to others who come here and are too overwhelmed or confused to undertake the basic protocol.

The loss of your input would be profound.  Where some of us can offer guidance and support, you offer scientific thought and insight.  Your motives have never been in question; you offered your valuable time and knowledge solely to help people.    I should hope we can find a way to remedy the situation and that you will consider this a hiatus and not a leavetaking.

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

DW, I am so sad to hear that you intend to sever your connection with this site. I found my way to treatment by you through the site and it still remains as a valuable resource for help and support. The link to your site has always been a link to solid medically based information for reference and reassurance.

When you have posted here, it has been an anchoring point in what can sometimes be a very fluid and unstable environment. What you have done is to provide just exactly the moderating influence that is needed in cases such as this, which if left unquestioned will promote severe unrest and distress within the community. The fact that you have taken the stance that you have certainly provides me with reassurance that I'm on the right course doing the CAP.

I strongly urge you not to remove your support and your link from the Cpnhelp community as they have been so valued and would be sorely missed.

Robert

MS for 20yrs. CAP since Jul 07, NAC 2400mg, Doxy 200mg daily, Azith 250 mg MWF, Flagyl for 4yrs.

David

My voice is here to say please, please don't do this!  I add to the others eloquent pleas (most of us are not good at begging - but we will if we need).  I think that would be equivalent to being invalids - which we are also not good at.  So that brings us to your leaving.  We really, really need you. 

There are always those who profess to be something they are not, and only dig their own graves in the end.  We can tell real credentials from ersatz, and yours are very real and are embedded in a very real, talented, feeling human physician.  So I will stop this before I end up in tears - of hurt, bewilderment, and frustration. 

Rica

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

Well said Rica, I agree completely.  You've said what's been going through my mind all day better then I could find the words for. 

I hope that what Rica said, along with what everyone else has said about this will change your mind David.  You've been a great help to us and those of us who know that are in the vast majority here.  The world is full of idiots and we need to know that clarity continues, along with fact.  I hope you'll stick around and help us see the difference.

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

Dearest Dr Wheldon,

Rica said what I feel and think in such a good way I can`t. Please stay with us, we all need you . You `re the one we trust and believe,

I end up in tears.

sphinx

 

 

 Wheldon CAP May 2008,   52  Tini pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpn free Oct. 2014

Dr W

 What you decide is up to you but I would like to say that when Avril and I saw you we were both struck by the simple fact that you had no agenda for helping us other than a powerful desire to share what you knew and help make avril better, That selfless belief you showed has helped us both through the dark times we have just been through and I feel lucky that a trick of geography allowed us to be seen by you. Many on here are not so lucky so need your input to this site.

Having met you I have faith in what you advocate, simply because you have no agenda except a desire to make people well.

 Thank you and I hope you and Sarah continue to provide support on here.

 

John

Carer (I hate that word) for Avril a 47 yr old with SP/RRMS since 2001. Wheldon protocol since August 2009, supps since Feb 2010

I don't question your decision to stop linking to this site, and to stop referring your patients to it -- there has indeed been quite a lot of garbage posted here. But to no longer post here seems too much like a surrender. It might help to know the rules of engagement for free-for-all forums:
  • 1. You don't have to respond to anything. (You have other concerns which can take priority over participation here.)
  • 2. You can, if you choose, respond to anything.
  • 3. Nobody was ever written down except by himself.
  • If the language of the last seems a bit archaic, that's because it's a very old rule.

    Since this seems to revolve around me, I will address it. David, I will not pretend that we do not agree on some issues and frankly I have found you to be disagreeable at times. However like some of the others here, I respect your unselfish attempts to help others. And at the end of the day I think this is what most importantly defines us so I will choose to remember that part. Best regards. To others that are upset, I have been involved with the Vanderbilt doctors since the inception of the work on Cpn. Initially I was the first patient and later I funded their research and studies over the years. I have also been involved in some other areas including suggestions for treatment approaches. When I realized many years ago that treatment was going to be as challenging as it turned out to be, I suggested setting up this support board. (I am not taking credit for the actual work of setting it up. That was all Jim.). Some have become concerned that I have posted experimental therapies and had exchanges with people privately with suggestions. This is in concert with the doctors at Vanderbilt. And you cannot have it both ways: to follow a protocol from these doctors and be appreciative for their efforts but then become upset if the the protocol evolves or changes. That said it is experimental and that is why for the most part I have chosen to do this in the background. - Paul

    Paul              

    Making the assertion that the positions you've taken are those of the doctors who have devised and revised the Stratton protocol is ridiculous.  For instance, when you suggested to me via private message to stop all antibiotics except Rifampin and add caffeine, no doctor would suggest that unless they knew that either the patient was cured and needed no other antibiotics, or, that there was some magic in Rifampin that there isn't.  The recommendation was ridiculous as I pointed out and dismissed at the time, and still do.

    I believe that DW said it best in this thread when he asked you to present the information to back up the position you took earlier. 

    http://www.cpnhelp.org/feeling_no_better 

    You still have not.  If this information exists, it would be available to divulge to strengthen your position yet here we are, days later, still asking you to bring it out.  Again, completely invalidating what you were saying, as any rational human being would conclude.

    best, John

    RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
    nac 4x600 mg/day
    doxycycline 2x100mg/day
    azithromycin 3x250mg/day MWF
    metronidazole 3x400mg/day then 3x500mg/day

    JeanneRoz,  David has been quite overwhelmed by these responses, especially yours and John's.

    He does now think that he should have worded the section about the internet differently: the inernet isn't untrustworthy, but it does need o be read with care.  After all, it was only his scanning of the iinternet which lead him to Stratton and Mitchell's patent which resulted in my cure.

    I so agree with you about the site going back to what it was created to be and I really hope that  David's disassociation  does not discredit the site whereas in reality it is the ill-judged advice of some people which is doing the discrediting.  I was looking for something yesterday and came across a raft of postings from three years ago which brought tears to my eyes when  remembered how it used to be.  All the hard work done by Jim going to rack and ruin.................Sarah

    An Itinerary in Light and Shadow

    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.
    Red

    Hi Sarah,

    It is very sad.   Please give our best to David and thank him for all his research and support over the years.  His efforts have made a huge difference in my life, and I will always be extremely grateful.   His presence here will be sorely missed...

     

     

    Treatment for Rosacea

    • CAP:  01/06-07/07
    • High-Dose Vit D3, NAC:  07/07-11/08
    • Intermtnt CAP, HDose Vit D3:  11/08-01/09
    • HDose Vit D3, Mg, Zn: 01/09-

    David you are the best. Both you and Strattoni have developed a breakthrough in medicine. This is still limited to the most inteligent people who denied the idea of being sick with MS or CFS. I have no doubt it will be widespread among all the others within the next decade. The truth will always win, it is just the matter of time.

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

    Thank-you Dr. Wheldon for everything you have done. I do not post here often but still check the site to see what is new here and was very sad to read this post. We appreciate everything you have done. I continue on my antibiotic journey, making slow progress but making progress is what is key here. I would not be where I am today without you, Sarah and everyone who contributed to this site. Thank-you!

    5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

    I am truly saddened that it has come to this.  If not for this forum I would never have learned about this treatment nor experienced the success that has come my way as a result of it.  Over the past two years I have received tremendous support from folks on this site.  I would not have been able to do this protocol without all the help I have received.  The majority of posters on this site are sincerely interested in this therapy and are willing to do what it takes to improve their health with this protocol.  However, there are a few (as is always the case) who have some need to appear as an authority figure and casts doubts on other people's successes.  A few months ago I had the unpleasant experience with someone such as that.  After asking for help from me on one of my blog posts he proceeded to question, doubt, and argue with my personal results.  He even sent personal emails to me in order to continue badgering me.  I refused to respond to his many emails.  As a result, I find myself visiting this site less frequently and updating my blog even less frequently.

     

    It is a shame that a few can ruin it for the many.  Dr. Wheldon I am sorry you feel that you can no longer contribute to this site.  We are all the poorer for that.  I hope that you will reconsider. If not, the value of this site is diminished.

     

    Lori

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

    Dr. Wheldon and Sarah, I want to thank both of you for your contribution in educating many to the treatment of CPN.  This is not a easy journey, and reading your stories and posts have been very helpful to so many. I hope this web site will continue to reach out and be a source of light to others. We all have stories that can offer encouragement to one another and I am truely thankful for the many who have reached out to me.

    Dr.Wheldon, I wish you and Sarah the best.

    Bonnie

    started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

    Multiple Sclerosis is a persistent infection and must be treated with antibiotic protocol as long as it takes to recover. This knowledge is still restricted to the most inteligent people who can only understand the turbulent conditions that inevitably must occur during treatment. I am sure that we will be completely cured while reaching the end of this turbulent road on the protocol.

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

    Bonnie, thank you from us both, but I  for one am not going anywhere: I want to keep this site as a source of light!.................Sarah

    An Itinerary in Light and Shadow

    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.

    Oh Sarah,

    I`m so happy to hear this  ,all the brave people, all  the ones like you and Rica , and all the others I didn´t mention, without you,this site would end like all the others, we need this source of light.

    There are more and more patients on the German site ,having started with David´s therapy.

    The word is spread.

     

    sphinx

     

     

     Wheldon CAP May 2008,   52  Tini pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpn free Oct. 2014

    Sarah,

    I´m so happy to hear this, you, Rica, John and all the others not mentioned, who helped so many of us, please keep this site up,

    it´s a pity we have to fight against ignorance , stupidity ,too.

     The word is spread, because there are more and more patients on the German sites, starting or following the Wheldon - therapy,I can suppport them , my German is better, as you supported me.

    sphinx

     Wheldon CAP May 2008,   52  Tini pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpn free Oct. 2014

    Sorry to hear it, David, but your decision really was unavoidable. You putting your professional reputation on the line is one thing, others doing so (by associating your name with treatments that you never espoused) is quite another. 

    I tried to "police" the posts for a while, pointing out that this-or-that wasn't the Wheldon protocol, or questioning people who complained of unendurable side effects or lack of results. Most of the time the thread had lost all influence by the time it finally came out that they didn't actually use your protocol at all. It was a waste of time -- not one of them ever retracted their complaints, or, to my recollection, ever turned around and actually tried your protocol.

     Actually, helping my friends with their computer problems convinced me that failing to get into Medical School actually saved my life and freedom. If I had become a doctor and said, "Take one of these red pills every 8 hours," and they didn't, that's fine. If they decided that their brother's blue pills every 12 hours tasted better, that's also fine. If they then broke out in big purple splotches and told people I didn't know what I was doing,  I'd have done something rash.

     Sorry, again, that your decision was necessary. Your work helped me a great deal, and I do appreciate it.

     Ron

    Ron

    On CAP for CFS starting 01/06 (NE Ohio, USA)

    Began rifampin trial 1/14/09

    Currently: on intermittent

    Ron (and David) - I find myself quite angry that the actions of one person can cause such an unhappy and unnecessary reaction. It never should have gotten to this point and I feel partially to blame.

    I have been sitting on a very politically incorrect and very direct response to the person responsible for this and I am trying to 'count to ten' before posting it. 

    I do have to say, however, that too many of us were too generous, letting him run out his rope too far before trying to rein it in. In the name of being polite, or generous, or patient, it was allowed to continue too long and became offensive, both in the lack of respect shown to DW and in the inaccuracies (and I'm being kind by saying that) of the statements.

    We pride ourselves here on giving support and good information to the site members - particularly the new ones, who read and absorb everything like little sponges.  With the addition to the site of one who posts imprecise, undocumented and vague generalizations while implying he has the authority to speak for another research scientist, and the loss of one who is valued, credentialed, precise and clear as water, I truly think we're getting the bad end of the bargain.

    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

    Mac

    I have been done with "political correctness" for the past few months.  I say you should post what you consider a "politically incorrect" response.  It is way past time that we all stop with trying to be "politically correct" and actually "say what we mean and mean what we say".  This site is far too important to allow it to be hijacked by a few when it means so much to the many.  I think of these type of posters as nothing more than playground bullies.  And you know what you are supposed to do with bullies, don't you?  You stand up to them and make it clear they cannot bully you any longer.

     

    This site is  extraordinarily valuable to the many people suffering.   We need to do all we can to protect it.  So I say, post away!

    Lori

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

    Lori, I am just emailing Mac to say exactly the same as you.  I even know what she is going to say!...............Sarah

    An Itinerary in Light and Shadow

    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.

    I agree with you all.....  I actually have a "blog Post" saved which I had to count to 10 about this morning.  So with that in mind.....

    JeanneRoz

    JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

    I am only slightly less upset with this mess than I was yesterday, and at the private (and, apparently public, as well) urging of many people, I am going to post the note I composed immediately after reading Paul's last post in this topic.  Let's all please remember that, by taking no action and making no comment, we are tacitly approving of what has been perpetrated here.  I can not stand by without voicing my concern and a few suggestions.

    Sunday, 14 March 2010 - Having spent an hour composing a response to Paul here, then losing it, I am in no mood to be politically correct.  I apologize in advance to my fellow site members for what I am about to say right now. I intend to be rather blunt.     I am a supervisor in a difficult workplace with its share of conflict and great challenges.  I know to praise very publicly and to criticize privately.  Normally, I'd have sent this via pm.  Today, however, as Paul has seen fit to post publicly on this topic, I will do the same.     Paul, count me among "the others that are upset", as you put it.First off, you repeatedly link yourself with the name of a Vanderbilt research doctor, then post about the new changes to the existing protocol, as if you are an authorized spokesman for Vanderbilt University.  If Vanderbilt actually revises the existing protocol, I have no doubt that Jim Kepner will immediately publish it here on the site.  Until such time as that comes to pass, perhaps you could limit your commentary to stating it is your PERSONAL opinion that the protocol should be revised'. And when you do this, please cite your specific sources and the specific science, omitting your 'it is  believed', 'it is commonly thought', 'we think', etc.   Veiled, and not so veiled, associations with this doctor (intentional or not) lead to a perception of credibility conferred by Vanderbilt itself, especially among new arrivals, who come here overwhelmed, brain-fogged, scared and confused.  This is not fair to them and it is not very honorable.      I don't think anyone is "upset if this protocol evolves or changes", as you put it. If this doctor wants to deliver a message to us, or discuss his thoughts with us, he knows just where to find us and he knows where to find the owner of this board, with whom he is well-acquainted. Let's let him speak for himself and you can then be free to simply speak only for your self.      Also, please refrain from giving posters and patients here strongly worded advice which is in direct conflict with the direction given by their doctors.  New people, in particular, are often confused and overwhelmed by this site and by just the basics of the protocol.  Advising them to alter, omit items, change dosages or add adjuncts not listed on the published protocols or directed by their physicians, is disrespectful, at best, and dangerous, at worst.  Unless you are a treating physician, your opinion is just that. An opinion.     While it is minimally interesting that you are the 'first person treated' on this protocol, I can post here that I have basically the same credentials you have.  I, too, am a cpn patient, am being treated by a physician, I often give input into my treatment, my doctor also discusses the science of the treatment with me,  I also fund her research into the field and I, too, encouraged Jim to start this site.  That still does not give you or me the right to insist our opinions are the only valid ones.     You are also dismissive of the unique position of respect Doctor Wheldon holds on this site and I am, yes, offended by it, as are others. He is a founding member of the site, a practicing physician and microbiologist and a valued, sane voice here.  Had David and Sarah failed to publicize their story and get the Vanderbilt patent and treatment information out, many of us would be functionally incapacitated or dead today.  We owe them a debt of deep gratitude and we are aware of it and we behave accordingly.  No one here is perfect, nor do I recall anyone claiming to be, but a modicum of respect toward EVERY member here would be appreciated.     Your not-so-thinly-veiled personal animosity for Dr. Wheldon should be your own - very private - business, and it should not be inflicted on these boards or on the site members.  Some of us here are NOT friends, for various reasons, but we are adult enough to endeavor to take it to private message, or simply not engage on the board and we endeavor to minimize the sniping on the site itself.     I am unhappy with the direction this is taking, to put it mildly.  For one person to be given so much leeway without having been called on it sooner was probably a mistake.  But, we do tend to be overly generous here.  When one member makes a snarky comment, we realize it could be due to a flagyl pulse, a sick pet, a strained financial situation, or any number of things we aren't privy to, and we generally let it pass.  When someone posts something we know to be inaccurate, we try to clarify and correct it without chest-thumping or personal attacks. We overlook it and we sometimes suggest private remedies.       When your recent posts became insistent and more a case of oneupsmanship than helpful, or supportive, or even factual, we all let it pass.  Perhaps we shouldn't have.     This site exists for the support of, and to provide factual information to, cpn patients and their physicians and caregivers.  We should all be mindful that it does not exist to bolster our own agendas or egos, to denigrate others, or to disseminate information not known to be factual.  While we discuss our own personal experiences, we label them as such and we are careful to gently remind newbies we are not treating physicians (unless we are one of the handful who actually are) and we refer them back to their own doctors repeatedly when giving personal advice. When we conjecture, we SAY so.      We've already been elsewhere and been misled, misdiagnosed and mismedicated and we don't want any of that here, because 'here' HAS to be a safe place that we can trust.  Let's be part of the solution, not part of the problem.

    _______

    And for those of you who haven't clicked on my name to see what I wrote on my registration page, here it is:   Optic neuritis in August of 2005 netted me a diagnosis of 'probable MSi'. I started full Wheldon protocol on 06 October 2005 and remain on it. My recovery is about 98%.

     

     

    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

    MacKintosh, I find nothing in your comment for which an appology is needed.  Much of what you write I have been thinking for some time now about the course of exchanges and comments written by the individual that you are addressing.  I find it refreshing to get these observations out into the open. 

    I agree with Ron that the action taken by David, inlight of the disrespect, blatently spoken, over the course of many comments in various forum topics, and the undermining of the doctor/patient relationships of people that he is in the postion to be of the utmost help, and that he entrusted to this community for support, has left him little choice.  

    I most certainly respect David's attempt to seek engagement publically by asking for supporting data and am not surprised that the individual could not provide any.   Quite some time ago, I asked the poster about his background and got nothing back that was at all satifactory to explain to me how he was entitled to make the claims that he had and the suggestions for altering the very basis of protocols, suggestions of which, I have been so often, in complete disagreement with and at time, have thought might be dangerous, in my opinion.

    Thank you MacKintosh and Paron, for speaking so well as to cover my perspective.  

    David, please accept my gratitude for your generosity and support which you have so freely given.  I for one, by following your form of the CAP protocol, have been recalled to a life worth living.

    Be well and continue to heal many,   Louise

    • CAP(TiniOnly): 06/07-02/09 for CFS
    • MethylationProtocolSupplements: Started08/08
    • Intermtnt CAP: 02/09-02/10
    • Full MethylProtocol & LDN 02/09
    • Off CAP: 02/10, cont LDN & MethlyProtocol support

    oh my.  How did this happen?  I haven't been here in a big way for a number of reasons, but arguing is one of them.  When Kim feels reluctant to post because she thinks her sharing will be taken over by an argument, I feel very sad.  This entire concern is sad.  I value our Drs. Wheldon, Sriram and Stratton and this unique special place Cpnhelp.

    I post on five other MS sites.  I bring this knowledge and information to those sites as best as I can.  The topic is not popular and I am not popular.  But I continue to try and share.  It is the only way I know of to find others who might need this as much as we do.

    So some might point out, "Hey, see Ken does the same thing, going to sites and sharing different and new information that's not really accepted by those who make up the site family."  The behavioral interactions between conflicting information is not new to society, message boards, groups or religions. We will always have concerns and opinions to differ over. 

    At issue, as I view the world, is how we share, not what we share.

    Much can be said for how Mohandas Gandhi or Martin Luther King did their sharing.  I'll refrain from making a contrast.  When Kim and I met with Dr. Sriram for the first time, we were surprised.  It was like we had to convince him that Kim wanted antibiotics and not the other way around.  He was about as unpushy as anyone could possibly imagine.  He wasn't encouraging. But, he was very genuine.

    So when I share information, I try to do it with a reverence for the science and the opinions of others. I try to provide genuine supporting information and I'm clear about who I am and what the limits of my experience is.  I am happy to leave an anonymous gift that someone may find. I don't need to know who is clicking on the information I leave, I'm just happy someone somewhere might be benefiting from it. IMHO, there is no alternative to gentle guidance.

    Peace, Ken

    In pursuit of ABX

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

    MacK, in both of your postings you succinctly express my sorrow at the recent waywardness of this site and my gratitude for David's invaluable stewardship. I would feel terrified without David's guidance here and I quail at the thought of the site's dissolution into a mindless internet forum. I would not have so readily accepted this long, difficult protocol had I not been assured from the beginning of the legitimate testing and careful research behind Dr. Wheldon's work. 

    So thank you and our other time-tested trail guides for your wise (and diplomatic) words and your continued vigilance.

    And, of course, of course, thank you Dr. Wheldon. 

    Nancy 

    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

    David, thank you for everything that you have done for me and for others during last years. It is unforgettable. I think you save many lives. All the more it is sad to losing your highly interesting comments and your presence here. This will never be enought regretted. Unfortunately I think the situation, which is solved here is a common and general feature of open internet discussions. It is very problematic to keep up enought freedom for users not to feel limited or banned and prevent spoiling purpose of the site in this manner at the same time. I know this very well from Czech forum, which was also spoiled by conflict with marshallists. I think this problem can never be fully succesfuly solved until we all will be excellent psychologists like JimK. The only thing we can do is guard more when problematic posts appear. It si my fault too, that I put my energy elsewhere, to the cz site and did not react equally here. I understand your frustration, though I wish you would not take this situation so personally.

    I wish you the best as well as to Sarah

    Your deeply grateful

    Lala

     

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

    I would like to get this forum fixed so we can convince Dr. Wheldon to stay. I want to refer people here without having them read posts from people who seem to be members of Dr. Stratton's team of researchers, when they aren't. And if someone doesn't think cpn is the problem, there are other websites they could contribute to. New people gravitate to the forum, and miss the Getting Started button. When I first arrived at the site, I didn't know what I was doing. I didn't find the protocol article and didn't realize there was one. I asked a question, and was lucky to have Sarah be the one to answer me.

    minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

    I agree completely Janice.

    best, John

    RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
    nac 4x600 mg/day
    doxycycline 2x100mg/day
    azithromycin 3x250mg/day MWF
    metronidazole 3x400mg/day then 3x500mg/day

    Me too.

    Nancy 

    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

    Well, David spent over an hour last night reading all the posts and before that he didn't realise how much he was thought of.  He told me that he would willingly reinstate the link from his site if it could be shown that certain people would refrain from sending private messages to people about different (better?) treatments.  This might have passed unseen if at least a couple of the people messaged hadn't been patients of his, who were then thrown into a frenzy and then wrote to David, not knowing what to do, having been told that heir treatment would not work.  I know this as well because some also write to me or telephone me, regarded by many as their gold standard of how things will hopefully be. 

    Now, some people are inclined to be over enthusiastic on the forum, but so long as they mention that their ideas are just that and not part of a new protocol, the readers will know.

    Norman gave the following rules of engagement in a public forum:

  • 1. You don't have to respond to anything. (You have other concerns which can take priority over participation here.)
  • 2. You can, if you choose, respond to anything.
  • 3. Nobody was ever written down except by himself.
  • This is fine and I personally would not like this site to be like  the Martian site, which is over controlled by certain people, especially one with a pointy beard.  There people are thrown off the site if they say the wrong thing, but here when private messages are sent, unasked for, it should be made plain that they are merely helpful suggestions.  However, things seem to be going wrong and it is one thing when someone asks if anybody knows a doctor living nearby who might treat them: I have sent many such answers myself but to receive a whole list of things they might try instead of what they have barely started themselves, often under the guidance of a doctor, is totally out of order and just serves to confuse people who are sick and vulnerable.  They don't want to be experimented upon: they want to know that they are doing a protocol where at least some people have already got better and are now living a life which they thought they had no chance of a few years ago.

    Now, David isn't so immature that he wants an apology before he either reinstates his link or returns to the board: he just wants people to tell the truth and not worry people without reason.

    So, ideas needed as to what should be done.  Jim is busy, busy for a few weeks so it would be nice to get a few ideas ready for him once he is able to put them into effect.  This site is too useful to go into rack and ruin..............Sarah

    An Itinerary in Light and Shadow

    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.

    Thank you Sarah, for within your statement, "to receive a whole list of things they might try instead of what they have barely started themselves, often under the guidance of a doctor, is totally out of order and just serves to confuse people who are sick and vulnerable," which goes to the heart of my observation that I did not directly speak, which is that that individual was acting in manner similar as to be, attempting to practice the art of medicine without license and unsolicitedly and covertly making suggestions as to be interfering with their doctor/patient relationship. 

    I am personally pleased that David may well reconsider reinstating his link to this website and to begin, once again, to touch base here occasionally for comment when moved to do so.  

    Sarah, thanks for sharing this news.     Louise

     

    • CAP(TiniOnly): 06/07-02/09 for CFS
    • MethylationProtocolSupplements: Started08/08
    • Intermtnt CAP: 02/09-02/10
    • Full MethylProtocol & LDN 02/09
    • Off CAP: 02/10, cont LDN & MethlyProtocol support

    Oh yes David, David, David! Thank you Sarah. This godawful disease is bad enough without losing one's shining light!

    Nancy 

    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

    It’s amazing that someone as valued as David doesn't realise just how important he is to so many people.Just go to show the humbleness of the man.David your input is critical and vital to this site. It gives it credence, not only for the access it provides to your work, but for people to know that this is backed by someone of your credentials and experience in this fieldPersonally I may not have undertaken the protocol were it not for you. I was devastated when I read your initial post. There are people from all over the world that you help through this site, who otherwise would be on there own in a downward spiralI can’t thank you enough for bringing this information to light, and being the humanitarian you are.To Sara, Jim, Mac and others I applaud your tireless work, kindness and compassionThank you

      David, I'm happy to hear that you will reinstate the link from your site. I believe this will be a good decision. Infact I don't personally feel that you have a right to leave here and these ill people. But just the opposite, you have responsibilities for them and should perform a more active participitation.

     yılmaz.

    KEREM'S TAKECARER;

    Suspıcıon of MS (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.

    Yilmaz, I kind of feel the same as you about rights and responsibilities, but when some of David's patients were being scared witless by private messages from someone here implying that his treatment wouldn't work, what was he to do?..............Sarah

    An Itinerary in Light and Shadow

    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.

    Hello all, I want to say thank you to Dr. Wheldon for helping so many on this site and because I was so moved by his determination to heal Sara I decided to try his protocol. I must say I am glad all of this has been discussed because I was feeling like quitting, confused and sorry for everyone who is ill and feeling the same way. Thanks again and hope to hear more from Dr. Wheldon on this site. Best regards,Patti
    FMS,CFS, 15 years,CPn antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAP end of Dec. 08 mino.100 daily, azith. 250 MWF all supplements,compounded T3 therapy.

      Sarah, David  has a strong support behind him, so he should continue. I can imagine how frustrated he may feel after all his efforts but this is MS and there is not a miracleous treatment. His treatment may work for someone but may not work for some others, there is no garantie.

      On the other hand I believe that patients who doesn't seem to get benefit after a long course of antibiotic treatment should add some other treatment methods.

     yılmaz

    KEREM'S TAKECARER;

    Suspıcıon of MS (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.

    Yes, but Yilmaz, how would you as a medical doctor feel, if you discovered that someone completely non-medical but writing as though they were in the heart of research  Vanderbilt, had been sending messages to some of your patients saying that the antibiotics they were taking would not work?  Some people, patients of only a few months standing,  have been scared witless.

    If you read all the posts you, though, will see that David more than likely will stay..........Sarah

    An Itinerary in Light and Shadow

    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.