With reluctance

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 metronidazolei, changing this to tinidazole as it was better tolerated. Supplementsi including antioxidantsi and vitamins B3, B12 and folate">i were taken. After six months rifampicin was substituted for doxycycline. Sarah made a good recovery following a rather stormy course. C. pneumoniae contains endotoxinsi 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 antibioticsi 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.

Comments

Louise,Will try to take your

Louise,

Will try to take your advice to stay tuned in and help with encouragement.  Also thanks for your congrats on my flagyli start.  I was a little scared but very excited.  It had taken me so long to start it, I wanted to celebrate with someone, but no one in my world would have understood the significance.  It's so nice to hear someone say "congratulations"!

Also, I read your input and it was helpful.  Sorry I didn't acknowledge it.

4DD

Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NACi 2400mg; doxyi 100mg x2, Biaxin 500mg x2, supplementsi, 1st pulse Flagy

4DD as I said on your recent

4DD as I said on your recent re-introductory blog welcome back.  Seems you may have missed my post as you did not respond to my input.

I noticed that we started a the same time and you went of and did your thing and I being less able to do much of anything but be in treatment and endure used this as used this website as my lifeline.  

As you move into more active nidazole treatment, remember your reaction to the thought of loosing something important here and stay with us checking in and supporting others with encouragement and hope, the best of the best that this site has to off, hope is the best step towards healing and CAPi and hope a powerful combination. 

The time that it took you to write both of your reactions to this thread can give you a glimpse at the amount of time that it can take to explain something to someone early in treatment.  You clearly have some knowledge of early treatment and how it worked for you and how much better you got from it at that time, that kind of support posting needs to be shared and you can be more helpful than you know.

I did read both of your posts and with the first one wondered how many of the pages you saw.    You can set your account to show all the posts everytime you go to a topic this helps to avoid missing posts that hide behind several pages if you have missed a topic that had a long history of response.

Best of treatment outcomes as you begin to use your third antibacterial in your treatment.    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
  • <

Ok, as usual, I didn't see

Ok, as usual, I didn't see everything here and screwed up.  I posted my emotional (previous) post after I had read part of this thread but somehow missed the rest of it, and therefore I only read the problem but not the proposed solution.  I realized that the thread was a few weeks old, but I thought it had not been solved.  Now I feel stupid as all my reaction was totally unnecessary as it was a day late and a dollar short.  I guess that is what I get for not being here myself for awhile and for trying to read and post late at night when I am tired. 

  I see now where DW may come back provided certain things are assured, I see where lou lou said to stop (sorry-I just now see it-don't ask me how, I guess I just read one of the pages and got so upset I didn't realize there were more pages in the thread).  I see where there is a renewed need to keep on topic of CAPi and state opinions as being opinions (as I remember Jim telling us when I first started).  I see where Sarah has said that Jim will be back also.  I am so relieved.  I was so upset. 

The problem that evidently occurred here is something that we not only experience on this site, but also locally.  I have experienced that some or many local doctors each have their own "different" way to treat, sometimes contradictory or at least different from CAP.   A local doctor may be way off or may come up with something fabulously new and wonderful, but I need to be able to compare with the standard protocol and make my own decisions.  If this web site goes, we will be cut off and have nothing to compare our local experience to and be left without the ability to make informed choices. 

I feel like an idiot for posting my last post, but I guess there was no harm in adding my 2 cents (albeit a little late) that this site is a lifeline, and if the leaders and  the knowledgable abandon us now, it will make it more difficult for us.

I would like to agree with lee (I think that is who said this).: If Jim is gone for awhile or taking a break, I wonder if it would be helpful for him to appoint an official or unofficial assistant to monitor/guide/advise the postings to prevent something from getting out of hand in the future?  Jim does it so wonderfully when here, but how do we do it when he is busy?  Perhaps I am behind on this, perhaps you have already solved this on another thread also. 

 

 

Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NACi 2400mg; doxyi 100mg x2, Biaxin 500mg x2, supplementsi, 1st pulse Flagy

Well, I just found this

Well, I just found this thread after just coming back to this site (taking a break as it were) and my heart dropped to my stomach.  I was wondering why I was not seeing quite as much specific scientific info like the info Jim and DW and others posted.  Now I know.  Jim is busy (which I figured) and DW left.  Others, I'm sure, who have become healthier are also busy and not posting anymore.  

 I'm reacting to this from my own bias, as I cannot guess what it is like to be DW.  But from my bias, I feel absolutely disheartened and deserted without DW and Jim and without seeing some other names of people who knew so much.  I feel like a soldier in a platoon who, when entering really bad enemy crossfire, loses his/her heretofore fearless leader (captain, sargeant...whatever-I wasn't in the military) that just runs away in the middle of battle.  OK, melodrama, but that is what I felt upon first reading it, not just because he left, but because it sounds like there is no leader now.  And this site is a lifeline and something to be proud of for many of us.  To lose it or any part of it is scary and sad and disheartening, because many of us have no access to Stratton, DW, Powell, etc.

I used to read a skydiving website....also a site were advice can be life saving or dangerous.  No matter how many intelligent and experienced people got on that site , there was frequently someone who was posting something questionable or even ridiculous.  Everyone, especially the site veterans, knew who was posting stupid stuff and everyone made sure to point them out so no one was lead astray unless they wanted to be.  I got more valuable advice on that site in a short time than I could have gotten in a lot longer time on a local drop zone (skydivers are always in search of ways to avoid fatal mistakes), even with the misguided people posting.  

This site isn't worthless if some people post misleading things.  It just is not perfect.  If you need perfect and perfect agreement in order to stay here, you might as well leave because people don't even agree on what is mainstream, much less what is experimental.  Nevertheless, we need people like Jim and DW to be bold enough to lead us in the right direction and insist that people who post non-CAP stuff point out it is non-CAP and is their own personal opinion, and if they don't, we point it out for them.  I even remember Jim doing that.  Shoot, even most of our local doctors that we go to are doing weird non-CAP stuff.  My doc does all kinds of off the wall stuff and the only way I have kept myself on track is through this site.    If the CAP experts leave, they leave us unable to track what is and what isn't the best course to follow.  I don't know what people have put on here that is crap, or just non-CAP, but if it is crap or non-CAP, I sure wish DW would stop in occasionally and say so, and not just leave us to figure it out ourselves, which we can't do very easily.  

This site was one of the best, most well put together sites, most well thought out efforts I have seen.  I am not as knowledgable as many here, with no major science background.  I agree that losing the experts is very serious.  We still have all the old info documented, so it is not like we are without a course to follow.  But the experts always refined the information and gave us the new info.   

Thank you MacIntosh and the others of you (I'm still not sure who is still posting and who isn't) for caring about the rest of us and not abandoning us.  I agree with MacIntosh.  I feel I have been given a wonderful gift by those who helped me here at the beginning, and those who are just finding this site now deserve the same.  I will do my best to try to hang around and help people who are new the best I can.  But I still feel abandoned.  And I don't know what many of you knew.

Is there anyone who is supposed to be a leader of sorts to fill in for Jim when he isn't here?  Jim was in contact with Stratton and kept us up to date.  Is there anyone who is doing anything like that now?  Maybe we need someone to do that.  Who is still here who has expertise in any scientific field that can shed light on CPni research?

I don't know what crap people have posted about no one getting better, but that's a load of baloney.  As I've said before, I don't know the statistics on total eradication of CPn, but it sounds like some of you have reached it or at least closely approached it.  I hope for this, but even if I don't make it, I have fought a good fight and won battle after battle I didn't think I would win, and I've gained enough ground I can barely see where I was before because I've come so far.  I hope the new people here can have the same experience.

 

Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NACi 2400mg; doxyi 100mg x2, Biaxin 500mg x2, supplementsi, 1st pulse Flagy

Marysia and Lee,Your points

Marysia and Lee,

Your points are well taken and understood.

All previous posts are as well .

All are intriguing as we all follow this journey.

Personally, I think it's time to stop.

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

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

I think Lee makes good

I think Lee makes good points. 

Because Dr. Stratton understandably doesn't post on this site himself, and because Jim is taking a breather, I very much appreciate Paul sharing his experience and insight from his personal interactions with Dr. Stratton and his colleagues at Vanderbilt.  I know of no other way to learn what is developing there and that information is important to me.

Marysia

Lee, Only Jim gets to decide

Lee, Only Jim gets to decide if there should be a 'replacement for Jim'. He's been busy this week, but don't think he's unaware or uninvolved. (Several of us step in to handle spammers and requests for minor editing.)

He's posted pertinent info for us and he does keep in touch with those closest to the research.

 

 

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

A replacement for Jim? 

A replacement for Jim?  No!! He started the site after seeing me at ThisisMS and he does a more than excellent job.  Several of us are willing to man the barricades but I don't like the idea of having a moderator.

The new lab at Vanderbilt is researching into better and faster ways of treating Cpni, but research always takes time and many paths have to be followed.  If the Vanderbilt protocol officially changes, Jim will be one of the first to know, being in such regular contact with them. This week he is working many miles from home and doesn't have much time to check what is happening here.  He has written a very supporting letter to David, though and I have put David in touch with a new patient from this site, who he is seeing next week.  Things will settle down...........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.

This is all so upsetting.

This is all so upsetting. Maybe what is needed is a replacement for Jim. Someone to moderate the site and keep in contact with Dr. W and Dr. S at Vanderbilt for any new findings. The opening of the clinic was (I thought) to find better, faster ways to treat cpni. Has anyone called Dr. S at Vanderbilt to see if any of this it true. I see that Dr. Siriam has added caffeine to some of his pateints. To what extent does it work. Is there merit in the future to replacing flaygl with caffeine? These are all questions that need to be answered. Science doesn't stand still. Protocolsi change. I hope that this can be fixed to make everyone happy. It shouldn't be necessary for anyone to leave. I think we are all adults here. At least most days.

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

The discussion we had with

The discussion we had with Sriram revolved around coffee and not caffeine.

In pursuit of ABX<

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

I am unwell tonight so can't

I am unwell tonight so can't write much. Just wanted to say I am very grateful Sarah you are staying here & telling us Dr. DW may stay linked to us here if certain conditions are met. Such really great news. Reading all the posts is so heartwarming to know such a good group of people here. I am relieved & feeling joy to know there is hope for this website to stay on track. It is a life line for me and so many others. Thank you all for being here sharing and caring. Thank you Dr. DW for your reconsideration.

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

From a little insignificant

From a little insignificant member, me.This whole journey is as scary as all hell and to know that the man who has done so much for so many (Me included) is thinking of walking away is heartbreaking and truly bloody scary.Please what ever can be done to hold this site together must be done because I have no idea where I would be without it,and there is so much proof here to that fact.David I don't know you but you matter more than words can say and Sarah your courage and strenth is needed to help bind us altogether.The person and he knows who he is should feel shame for what he has been doing and know that people have had enough and learn from all of this and work towards being a better person.

sunshinecoast Australia.Fibromyalga suffer recently informed I have CPNi started on Doxyi 50ml twice a day 21.2.09 

As a patient of Dr Wheldon I

As a patient of Dr Wheldon I have been uneasy for quite a while now with the direction that this site seems to have taken. I haven't posted much but I have looked in occasionally and am aware of the questioning of the protocolsi that brought me to this site. This has worried me thinking am I doing the right thing, should I be adding this, changing that or stopping altogether after 30+ pulses. Fortunately I haven't posted about this so I presume that for this reason I wasn't a candidate for any suspect pm's.

I am truly thankful that David has brought this state of affairs to light and think that maybe the terms and conditions for site use should emphasise the difference between practitioners and patients when posting. I also hope that David reconsiders his decision, restores the link from his site and drops by occasionally.

I echo all that has been said by Mack, John and many others....me too!   Carol

speedbird

  Sarah, David surely can

  Sarah, David surely can cope with this. As a patient on CAPi and especially as a caregiver of a small children who may need CAP in the future, I certainly need a more active David Wheldoni. I'm sure many others need the same.

  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.

Yes, but Yilmaz, how would

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 antibioticsi 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 MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

  Sarah, David  has a

  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 MSi 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 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.

Hello all, I want to say

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
FMSi,CFSi, 15 years,CPni antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAPi end of Dec. 08 minoi.100 daily, azith. 250 MWF all supplementsi,compounded T3 therapy.

Yilmaz, I kind of feel the

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 MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

  David, I'm happy to hear

  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 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.

It’s amazing that someone

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

Oh yes David, David, David!

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

Nancy 

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

Thank you Sarah, for within

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

 

  • 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
  • <

Well, David spent over an

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 MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

    Me too.Nancy 

    Me too.

    Nancy 

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

    I would like to get this

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

    I agree completely Janice.

    I agree completely Janice.

    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

    David, thank you for

    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 CFSi and many problems 30 years

    MacK, in both of your

    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 

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

    oh my.  How did this

    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 MSi 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 antibioticsi 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. IMHOi, 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

    MacKintosh, I find nothing

    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 protocolsi, 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 CAPi protocol, have been recalled to a life worth living.

    Be well and continue to heal many,   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
    • <

    I am only slightly less

    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 protocolsi 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 cpni 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 flagyli 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

    I agree with you all.....

    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 ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

    Lori, I am just emailing Mac

    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 MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

    MacI have been done with

    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 Di 50,000 IU weekly

    Ron (and David) - I find

    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

    Sorry to hear it, David, but

    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 CAPi for CFSi starting 01/06 (NE Ohio, USA)

    Began rifampin trial 1/14/09

    Currently: on intermittent

    Bonnie, thank you from us

    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 MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

    Sarah, I´m so happy to hear

    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 CAPi May 2008,   52  Tinii pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpni free Oct. 2014

    Oh Sarah,I`m so happy to

    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 CAPi May 2008,   52  Tinii pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpni free Oct. 2014

    Multiple Sclerosisi is a

    Multiple Sclerosisi 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.

    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

    Dr. Wheldon and Sarah, I

    Dr. Wheldon and Sarah, I want to thank both of you for your contribution in educating many to the treatment of CPNi.  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 capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

    I am truly saddened that it

    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 Di 50,000 IU weekly

    Thank-you Dr. Wheldon for

    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 tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

    David you are the best. Both

    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 MSi or CFSi. 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.

    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

    Hi Sarah,It is very sad.  

    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 Rosaceai<

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

    JeanneRoz,  David has been

    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 MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

    Since this seems to revolve

    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 Cpni. 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            

    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 antibioticsi 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

    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 don't question your

    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.

    Dr W  What you decide is up

    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/RRMSi since 2001. Wheldon protocol since August 2009, supps since Feb 2010