MediTest
27 Apr 2018
Author
Timaca
Title

Stanford Chronic Fatigue Initiative Website is online

Body

See:  http://chronicfatigue.stanford.edu/Info on Cpn and other pathogens is presented in this website.  Best, Timaca

Comments

Yay!....  now maybe CPN will get some credence!

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

Not much info on C.Pn. on the above Stanford website. It seems to me to be primarily viral in it's focus from what I can see at this point in it's development.   I realize that C.Pn. for them is considered a minor player when I looked at the (Rule Out) diagnosis webpage;  http://chronicfatigue.stanford.edu/overview/diagnosis.htmlYet these same rule out diagnosis are on the homepage of CPnHelp.org here.Also the information page regarding C.Pn. which speaks only about a very limited number of conditions none of which are on the Rule out diagnosis webpage.  http://chronicfatigue.stanford.edu/infections/chlamydia.htmlThe poster of this announcement has been on monotherapy (doxy only) for CPn for around three years always saying that next time the remainder of the CAP combination may be added and it hasn't been until this time from what I can see, perhaps I am wrong.I am happy for Timaca that her viral treatments have been a huge answer for her, after all Chronic Fatigue is yes a syndrome and a syndrome is a combination of  multiple signs and symptoms.   I was tested for a lot of the viruses and they are just not in my mix.   And frankly, many people cannot afford the testing or do not have access to it even if they could afford it completely out of pocket.       I personally just don't see much support for CAP at this study center,  and in particular, if you have any the diagnosis from their rule out diagnosis page (which many who post here have that are doing a CAP)  or from the list on the front page of this CPnhelp.org website you are not being considered for their study for your chronically fatiguing symptoms if you have a ruled out diagnosis.  That rule out list is huge take a look.   It seems that if you have any of those diagnosis your fate is sealed and don't bother to look to that Stamford pracitce for your treatment even if you happen to have one of their mentioned pathogens, that is what I get out of all of this info on this website.  Perhaps we should all invest in Focus Labs, I wonder what the connection there is with Stamford?   I guess there will never by one answer for everyone but I just don't see much credence given to CPn in these webpages, regardless of the existence of the visting experts page.   here.Just a personal opinion being expressed here which reflects my lack of enthusiasm for the limited focus given to CPn by this Stamford located practice.     

  • 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

My point is that unless you are very early on in your unrelenting fatigue and have no history of any previous (and possibly eroneous) diagnosis, you may well be disqualified on the basis of your past medical history.  Glad that I am not interested in Stanford they are limiting their investigation to only the very early stages of chronic diseases.   I am sure that some good will come from them but not for most of the folks looking here for help now.   If you have been pegged with any of the below conditions, and even if you also just happen to have the have the viruses in question you will not likely be treated at the practice that the website of Stanford is showcasing.Here is the contrast that I wanted to point out above spelled out in the following excerpts. From the homepage here at C.Pn. Help:

Cpnhelp.org: A website devoted to the understanding and treatment of Chlamydia Pneumoniae, an infectious bacteria implicated in a number of human illnesses. Cpnhelp.org is a non-commercial, website run and supported by volunteers, and does not take monetary or other assistance from any other sources.www.cpnhelp.org was started by educated patients who are themselves undergoing combination antibiotic treatment of diseasesi where Cpn has been implicated, including: Multiple sclerosis, Chronic fatigue, Cardiac disease, Interstitial cystitis, Prostatitis, Crohn's disease, Inflammatory bowel diseasei, Alzheimer's disease, Asthma, Arthritis, Fibromyalgia, Chronic refractory sinusitis, Macular Degeneration, and others.

From the above Stanford Website;

Before considering the possibility that a patient may have infection-associated CFS, the patient would need to have experienced fatigue for at least six months, and the patient's primary care provider would need to rule out the following categories of diseases as possible causes of the patient’s fatigue. We have listed some examples of common diseases to rule out in each category.Autoimmune diseasesDermatomyositis Lupus erythematosis Reiter’s syndrome Rheumatoid arthritisSarcoidosisSjongren’s syndromeVasculitis Endocrine diseasesAddison’s disease Diabetes mellitus Hyperthyroidism Hypothyroidism Ovarian failure Panhypopituitarism Gastrointestinal diseasesCeliac disease Crohn’s disease Irritable bowel syndrome Ulcerative colitis Neuromuscular diseasesMuscular dystrophies Multiple sclerosis Myasthenia gravis Psychiatric diseasesAlcohol/drug abuse Anxiety disorder Depression Hyperventilation syndrome Manic-depressive illness Schizophrenia Other diseasesDysautonomias Narcolepsy Sleep apneaNew or recurring cancer

The premis being that none of the above could possibly be related to an infective process? it seems to me.  After all most of these "conditions" can be managed with pharmacological support (medications, very expensive ones too) so why look any further I guess.Oh well, those young virus affect folks will get some antiviral pharmacological support, I guess that is a good thing for that segment of the population, not the rest of us though.   Enough of a rant on my part, perhaps this topic will fade into the dark chasm of the archives.  Or perhaps it will be attached to every question from here on by Timaca, time will tell.  So here is my two cents if that becomes the case.   I'll stop my active imagination here and go no further about this.Personally I appreciate CAP as a treatment, most of the people that are helped just stop posting here and go on to live their lives.  Personally I hope that this post does not have most new folks booking air flights to the Stanford "Center".   Very impressive of them to call themselves the center for a certain diseases study big money in that for sure!

  • 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

I hope they focus on biomarkers of "specific infections" as opposed to biomarkers of "processes". The last thing we need from them is to be told that x perecnt of people with " cfs" will go on to develop stroke, ms, arteriosclerosis or alzheimers according to thier biomarkers as indicators of processes. Id like to be told... Hey these biomarkers are indicative of x infection be it cpn, lyme staph whatever. At the very least, even if they focus on process, it might provide a sense of dignity for cfs sufferers in that the condition would be documented as proven to be a real debilitating disease with clear chemical and physical changes. Please let me know if any clinical trials arise, you can pm me privatly if you wish. Thanks for this information, yet im always sceptical of the motivation and force behind institutional research, I just figure at some point, somebody is going to get paid off alot of money by big pharma to find alot of nothing that points to cure and something that points to bandaid. Its always the way.

     &nbs

Jeaneroz~  We are hopeful that not only Cpn but other pathogens will be recognized as contributing to various health conditions.  Of course, this will take research to prove the link, but I am grateful to doctors like Dr. Stratton, Dr. Montoya, Dr. Chia and others who are looking at those possibilities.    Dr. Montoya is working with Ian Lipkin and others now.  See:  http://chronicfatigue.stanford.edu/about/projects.html       (Look at #1)....then look at Ian Lipkin's biography:   http://www.mailman.columbia.edu/our-faculty/profile?uni=wil2001    I am very excited about the research that is happening!Louise~ We were thrilled that Dr. Stratton particpated in a meeting almost 2 years ago with 11 other doctors to discuss the topic of infection associated chronic fatigue syndrome.  (Perhaps you remember me inquiring about possible doctors on this site... ?)  We were equally thrilled that he chose to submit information on Cpn so others can be helped.  I disagree that the focus of the Stanford website is primarily viral.  Certainly there is info on viruses there, as there is info on tick borne diseases and Cpn.  Info will continue to be added to the site as it becomes available and time permits.   I am very excited about this website as it can allow people the world over to have access to this information.  Most doctors don't think to test their patients for Cpn, HHV-6 or enteroviruses....so now this info is available and people can begin to get adequate testing.Testing is important.  I have seen that Coxsackie B3 and B4, HSV 1, Cpn, HHV-6 and EBV are all players in me.  Without that testing, I would potentially be treating the wrong pathogen because the symptom set can be the same.   You have to test.  There is no way around that.  You can't assume something is caused by a pathogen without testing.  It may not be caused by that pathogen at all.CAP was not presented on the website, for a number of reasons...probably the main one being that there is no research as of yet to back it up.   There is one study on reactive arthritis and chlamydias that recently came out where 2 antibiotics were used and was helpful in that patient population.  That is encouraging. (It's #1 on the Cpn research page. )  We did put a link to this website on the Links and Resources page so people could dig a little deeper into Cpn if they wanted to. You seem disappointed that people cannot be included in the studies of CFS if they have other diagnoses.  Well, it makes sense to exclude people if other medical conditions are causing their problems.  If someone has thyroid issues or anemia, their fatigue may be from that.  You have to exclude people if other medical conditions explain their medical problems.   If someone has no other medical problems that are obvious, then you start looking for infectious pathogens.  Dr. Montoya is very interested in getting to the bottom of what is making us ill.  Not only people with CFS, but also those with MS and other chronic illnesses.  God bless him.  He is working really hard.  And I believe he is going to find the answer.  And how to best treat the problem.  I am one of his patients and I can tell you I get tested regularly for lots of pathogens, including Cpn.  It is because of this regular testing that we have been able to identify what pathogen is causing my problems at any given point in time.  My health journey is found here if anyone is so interested:  http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=di…   (You will need to sign in to read the posts).I have not had time to change my signature here, for I've been busy with helping with the Stanford website, other projects at Stanford, and my book (which is due out soon)     http://www.whensomethingswrong.com         (Gee, I haven't even had time to work on my book's website lately.....I need to do that! )    I've actually been off antibiotics for a while......but may be going back on them (likely 2 if I do) in April, if my labs so indicate.    Maybe this coming week I'll have a chance to update my signature here.   My advice to all....read through the Stanford website....rule out the obvious, using the diagnosis page under "What is CFS?" If those come back OK, then get tested for various infectious pathogens, and treat what looks to be most obviously wrong.  (Meaning the ones with the highest antibody titers.)Best to all,    Timaca  

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

No not disappointed Timaca;

CAPi was not presented on the website, for a number of reasons...probably the main one being that there is no research as of yet to back it up.   There is one study on reactive arthritis and chlamydias that recently came out where 2 antibioticsi were used and was helpful in that patient population.  That is encouraging.  We did put a link to this website on the Links and Resources page so people could dig a little deeper into Cpn if they wanted to. You seem disappointed that people cannot be included in the studies of CFSi if they have other diagnoses.  Well, it makes sense to exclude people if other medical conditions are causing their problems.  If someone has thyroid issues or anemia, their fatigue may be from that.  You have to exclude people if other medical conditions explain their medical problems.   If someone has no other medical problems that are obvious, then you start looking for infectious pathogens.  

As I have said in my comments that precede this, many who are successfully treating with CAP have any number of conditions from that list of Rule Out Diagnosis  (listed in my post above).  Nothing is all or nothing and that is the problem with having any diagnosis, getting put in a catigory that begins to become the explaination for all of your ills, a diagnosis is one opinion, and opinions can be wrong, most folks that have wandered from doctor to doctor know that, people can have multiple situation.   I don't have to tell them the multiple labels that they have been given.But I did expect a debate with you.  I simply want to share what is apparent to me for all to read.  Yes by all means read the website under discussion everyone, I did.  And if you can wait for 10 - 20 years there may be more inculsion of the CAP approach.   Personally I doubt it, because there is no money being spent on antibiotic oriented research for bacterial diseases, and people with those listed afflictions can be medicinally managed with expensive pharmaceuticals not inexpensive abx so why bother looking in that direction.   Timaca, I know how invested you have been in spreading inforamation regarding the viral treatments with posters here asking questions this has seemed to be your position since your start in the discussions here.  Yes I recall your secret meeting that you went to but could not talk about several years ago and really you never did.  Seems we had words around that back then.As I said I am happy for you that you have found that viruses are your primary focus and that your treatment is working for you.   Still you have been very active here spreading this concept without having done more than monotherapy antibiotics. And again this discussion has also been had in the past as well.This website's focus is Combination Antibiotic Protocol for chronic persistent intracellular bacterial disease and speaks to the economy and value of an emperical trial of this approach.  Be well Timaca.   I did think that you were involved in the setup and running of that website, I am glad that you confirmed that, I thought I was just having flights of fancy.   Nor did I consider the publicity for your book that you mention.  Since you have never done CAP I do hope you don't try to represent but do suspect that you will.    Anyone can write a book these days on lulu.com it is truely amazing.So I will just continue putting my support and successful CAP treatment on record here, should anyone choose to read my comments, which are certainly only, my opinion.   Timaca,  I am glad that you are able to fly to see your MD at Stanford, that is out of the question for many posters here.    So from that perspective this emperial CAP treatment has a great deal of value and it is available now, not after most of us are dead and gone waiting for full research results fully replicated.      Respectfully yours,   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

Timaca, thanks again for this information. I just want to let you know, i also have an active virus hhsv-1 and take valtrex, however, I do notice that it stays in check when i am on long term antibiotics and i do not require the antiviral. This suggests to me in my case that the bacteria is the main player and the virus is the the product of a depressed immune system, which, is inline with straton research, and other research on bacterial infections how they affect the immune ststem and then how secondary viral infections come into play. I believe i reacted to rifampin so badly because large amounts of hhv1 were released during the apoptosis and the load was more than my lymph could handle.  Im glad that the antivirals are helping you , They help me as well.I suspect my cap treatment for cpn would have been much less painful and debilitating if i had have been on valtrex at the time I took rifampin, however im just speculating, but I do plan to stay on valtrex throughout any future treatment i do. Please give your dr my reagrds and Im looking forward to your book. I sincerly hope that stratton research will be acepted and appreciated for the full % of its worth when it comes to c. pneumoniae infection and cfs. Ive always believed it is the most relevant infection -generally speaking,  IMO.

     &nbs

clammed up~I also have HSV 1 and it causes me considerable problems....it appears to cause in me not just outbreaks on my lip, but full body horrific muscle pain and tachycardia.  How much valtrex are you on?   I am on acyclovir (800 mg) and it is not controlling it well at all.  Valtrex might be an option for me, but my doctor did not want to use it with the antibiotic I was on, as both meds were processed in the liver, and he did not want to over tax my liver.  So, he put me on acyclovir.    I am no longer on antibiotics, but may be starting some at my next appointment. Why do you think rifampin caused HSV1 to be released during apoptosis?  I was on rifampin for just 1 week, to help clear Coxsackie B3 and B4.  (One of my ID doctors believes rifampin has antiviral properties too).  I ended up with a huge herxheimer reaction, which included 3 bouts of tachycardia, fatigue, and a visual disturbance.  I thought at the time that rifampin was killing off something else besides Coxsackie B3 and B4...but I was thinking Cpn, not HSV 1.Rifampin is a drug I would like to try again...Best, Timaca

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Hi Louise~   Money is hard to come by for research.  Either one applies for government grants or looks to private donations.  It would be great to have the funds available to see if CAP would work for MS and other chronic diseases.  Until the funds are available, that puzzle will go unsolved.  That is why many of us do try unproven (ie not backed by placebo controlled double blinded studies) therapies.  We want to get well.  I'm sorry you think that I talk only about viruses.  I don't.  I try to share equally about all pathogens.  If people here have tried CAP and it isn't working for them, then yes, I will suggest testing for other pathogens.  Likewise, if people have been treating for viruses, and it isn't working, I'll suggest testing for Cpn and other bacterial pathogens.  It just seems to you that I share only about viruses....but you haven't been on the websites were people are treating for viruses, and I suggest bacterial pathogens to them.   WinkThe meeting that took place in April of 2009 was not for the public....so information about it was not disseminated.  I was helping to organize it and so I was looking for suggestions of doctors.  Basically it was a meeting for people who we thought would be interested in discussing pathogens that could be associated with chronic fatigue syndrome.  Dr. Stratton was invited, and he graciouslyattended. It was a great meeting, and the website idea was birthed there.  Viruses are not the primary focus of my illness.  I know I have a chronic bacterial pathogen too.  Unfortunately, I have too many pathogens to deal with!  FrownI'm glad that the Cpn website is here so people can look more indepth at Cpn.   And I'm glad your health has been restored by CAP.  I hope everyone can attain good health again!  The Stanford website was created because we saw the need for people to get treatment in their hometown, with their local doctor.  We hope it helps people to do that.  Dr. Montoya is well aware that pathogens may be behind many chronic diseases, including MS (it's stated in the box on the home page:  http://chronicfatigue.stanford.edu/ )......but one still has to rule out various medical conditions......especially if you are looking to participate in a research study.   Well, I've got to run....one thing we can be grateful of, Stanford is at least saying something about CFS and other chronic illnesses and the possible connection to infections, and not many major medical university centers are doing that.  See:   http://forums.aboutmecfs.org/content.php?372-The-Stanford-Initiative-Fo… best to all, Timaca  

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Timaca, thanks for keeping us in the loop.  The fact that Dr. Stratton is linked to this website, and that he discovered the CAP treatment for C. Pneumoniae, AND now is associated and linked on the Stanford website, is a step forward. 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

Okay, Timaca, is it Stanford or Stamford? I'm getting confuzzled.

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

Mack, Wink  I don't think you are confuzzled, LOL!

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

Well, perhaps I'm confuzzled about BEING confuzzled? I might be totally lucid (though I doubt it). Tongue out

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

Let's see who can have the last say Timaca, I think you have gotten all of your promotional links in to attract folks to all the websites that you promote.  And yes, of course there is your new book, I am sure you are riding high with your helpfulness to mankind.  And yet, still you never did take a course of CAP as is the focus of this website (doxy 100mg twice a day no other).  I get it now you would have disqualified yourself in some way by adding CAP.  The Stanford website was created because we saw the need for people to get treatment in their hometown, with their local doctor.  We hope it helps people to do that.  Still, you are such the organizer and so important, bet they pay you for it too, clever of you in the end.   We who?     

  • 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

It is Stanford, not Stamford.  http://chronicfatigue.stanford.edu/By "we" I'm meaning myself and the people at Stanford I work with to get these projects done.   This includes Dr. Montoya and his research assistants.   I've been  in touch with other doctors too, including Dr. Stratton (love him), Dr. Chia and others.    All I do for Stanford and other places is volunteer.  I am not paid.    As you can see from my book's website, all profits from the sale of the book (after taxes) will benefit those who suffer from Infection Associated Chronic Fatigue Syndrome.   http://www.whensomethingswrong.com/    All my efforts are to help others....there is no personal motivation or payment.  I know what it's like to suffer, and I want to help others in the same situation.   When I have some time, I actually hope to add the Stanford link to my book's website, as well as a link to Vanderbilt.  However, I'm not aware of a donation link there.  If you know of one, let me know, so I can add it to my books site.  :-)  I haven't had the time, but since my book will be out soon, it will have to be a priority.  I really have to go....got an out of town conference.   I'll check back after the weekend to see if there are futher comments.   I'd love further feedback on the Stanford site.  Or any other ways you can think of that patients need help with.  I'm all ears.  We are seeking to help patients.....all patients who struggle with chronic illnesses.  Best, Timaca

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Louise~   I'm confused by your comment on how my taking CAP would disqualify me.....Not sure what you mean.  I am not currently involved in any research studies at Stanford or elsewhere.  I haven't been put on CAP for the doctors have been busy beating back other pathogens.  Plus, I'm not sure that they would go for 3 antibiotics at once.  Two, maybe...even likely.  We'll see what the next appt brings and what my labs look like!  WinkBest, Timaca

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Timaca, I guess you have never fully understood the science as explained here regarding the three antibacterial substances taken together, two continuously and one pulsed to adress the three distinct forms of the C.Pn. bacteria.   Timaca wrote;   "Plus, I'm not sure that they would go for 3 antibioticsi at once.  Two, maybe...even likely.  We'll see what the next appt brings and what my labs look like!"    (They being her providers at Stanford)Yes, yes you have said that over and over and over again for almost 3 years now, you are on the brink if starting a second abx.    Certainly that is your option but my point is that you have never done a CAP protocol, regardless of how much you think of Dr. S.I'd like a penny for everytime that that the following information is logged somewhere in the archives here at CPn help; one abx (monotherapy) will not address all three forms of the bacteria, chronic persistent intracellular bacteria, Chlamydia Pneumoniae.  

  • 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

Thanks Timica for that information I read the info over and noticed Dr Montoya mentions Rifampin as a good over all antibiotic I wonder why I am using Doxy Azith and Falgyl then?  

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Enough! Louise, if you have a personal issue with Timaca, take it to private mail. This is HER topic.If the topic doesn't interest you, PASS IT BY. There's no requirement to make a comment on every single topic posted here. Ignore it or take it private. No one here wants to read these personal attacks, however 'nicely' they might be phrased. This is uncalled for.

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

Homina, You are using doxy, azith and flagyl because rifampin does not replace all of them. Remember, the idea of using doxy and azith together is to stave off the possibility of developing resistant cpn. After you do the prescribed protocol for a year or more, you can always add in the rifampin. Rifampin is VERY touchy stuff, though; you can't start and stop it. Once on it, you can't mess around with it - you're committed. (It may be best to save it for later.)

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

First, I think it is basically a good thing that infectious cause of chronic illness gets more research, understanding and attention. It seems excellent that Dr Stratton is an expert consulted for Cpn. Surely, he can keep things straight.  (edit MacK aws quicker and said it better but I let the things below stand) Homina, it seems you'd benefit from reading the handbook more carefully. I can not find where Dr Montoya mentions Rifampin as a good over all antibiotic? As I understand it, Rifampin is never to be taken alone, as resistance easily develops. It is also only active against the replicating form of Cpn, the RBs, but highly, so essentialy being bactericidal. For this reason another antibiotic active against RBs (and this can be a bacteriostatic), as well as one active against the cryptic form (CBs) are needed (Nitroimidazoles are used for this). The antibiotics active against the RBs in the first stage of the VU and Dr Wheldon's protocol are essentially bacteriostatic in nature (a macrolide and a tetracycline). As Rifampin is Killing (cidal) to the same form, it is much more potent, that is also the reason that it is introduced later in the VU protocol. As I understand it (this reservation applies to this entire explanation), the reason Dr Wheldon does not include Rifampin is that in the UK it is reserved for other diseases (as a way of minimising the risk of it loosing its potency by resistance developing, as I discussed earlier).   Somewhat similar to Rifampin, Fluoroquinolones (Ciprofloxacin, Levo, Gemifloxacin, etc) are killing the RBs, but are not very suitable for long-term use (although have been tried in other chronic infections), and can create resistance as well. Dr Stratton comments that a shorter course can be effective (I think it is mentioned in the description of the experimental protocol).  Note that I am only a layman and fellow pat. 

Borrelia/Cpn arthritis: joint, skin, eye, CNS, respiratory, UG involvment; fatigue. Borrelia: Clinical, Elisa&WB IgG, and CPn IgG and IgA pos, HLA-B27 neg. (2010). CAP 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?

Oh dear not again Mackintosh.   My point is that a single antibiotic monotherapy is just what this website tries to warn against as both you and Nord have just pointed out.    A topic is not a blog, I don't see this as Timaca's topic unless it is in her blogspace.  I feel that I have points to make on this topic.  I have made them directly and respectfully as possible.Enough Mackintosh.

  • 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

 Correction Dr Montoya quotes another source http://chronicfatigue.stanford.edu/infections/chlamydia-treatment.html "Extracellular elementary bodies and very-early-phase and late-phase chlamydiae were refractory to all tested antibiotics except rifampin, which was very effective against early-cycle chlamydiae. Rifampin was the most effective antibiotic overall" 

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Homina, you cut the sitation of  Siewert et al. out of context "Extracellular elementary bodies and very-early-phase and late-phase chlamydiae were refractory to all tested antibiotics except rifampin, which was very effective against early-cycle chlamydiae. Rifampin was the most effective antibiotic overall, killed in a dose dependent matter, and exhibited moderate synergism with erythromycin. These considerations provide important information on chlamydial biology and antimicrobial susceptibility. A combinational therapy of rifampin and a macrolide should be considered in therapy-refractory infections." Obviously, Siewert, and most likely Dr Montoya does not consider Rifampin alone. With that said, Siewert seem to either not share, or are not aware of, the opinion of Drs Stratton, Wheldon, and others, that the Cryptic Bodies are not sensitive to the suggested combination. Interestingly, Dr Carter (University of Southern Florida), Vasey et al, who have done reserach on Reactive arthritis caused by Chlamydiae, also treated with a similar combination as Siewert suggests (and for about the first time showed significant improvement of the condition from antibiotics), but according to a post on this forum, considered adding a nitroimidazole. Hopefully, with Dr Strattons additions, they will move ahad towards mroe efficient (also considering die-off etc in heavily infected patients) treatment protocols.  Many here have reported additional benefit from Rifampin, I recall Rica, Munchman (but with suspected Bartonella, the improvement can be due to it being eliminated), and Lala, but there are several others. I plan on including Rifampin (it is in the treatment plan from an LLMD, but I have not started it as per the VU protocols (to be included when there is no or limited reaction to nitroimidazole), the reasons MacK mention. One needs to be sure that there is no huge infection left in the body (otherwise there may be potential for organ failure as Dr Stratton has discussed), and the general effects of die-off needs to be manageable. 

Borrelia/Cpn arthritis: joint, skin, eye, CNS, respiratory, UG involvment; fatigue. Borrelia: Clinical, Elisa&WB IgG, and CPn IgG and IgA pos, HLA-B27 neg. (2010). CAP 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?

"Rifampin was the most effective antibiotic overall"I  guess I need to ask the question overall in what context?Were they saying it's effective against Cpn in all stages? For long term use ?That is how I read it  That doesn't mean I am going to swithch from CAP to Rifampin but I will ask my Doc for clarification    

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

I don't see the debate as to whether there is too much emphasis on viruses by Stanford being that big of an issue.  I remember reading a few weeks ago that Dr. Stratton focused his research on MS, in part, because of the stigma in the medical community of considering Chronic Fatigue Syndrome as a "real" condition.  The fact that another major university is investigating the link between infection and chronic fatigue is great news!Here is the link to what I referenced about Dr. Stratton above:http://www.prohealth.com/library/showarticle.cfm?libid=12763Many of you have probably seen this article.  This is how I found cpnhelp.org initially and is also a link that I will send family or friends that are curious about my diagnosis.

Started CAP for Cpn on 11/14/10 - Per my doctor, paused Abx 5/18/13 - NAC, B-complex, Vit D3 (50,000/week), Niacin (100 mg/BID). Started Buhner protocal (2nd edition) on 8/30/16. Currently using a blend of Buhner's Cpn and Mycoplasma protocols

Thanks LLeach for uncovering that link and article, which is now 4 years old as of this writing.  It is helpful to have it included here in this thread.http://www.prohealth.com/library/showarticle.cfm?libid=12763.My point was not the information regarding viruses as some of the many reasons for extreme, unrelenting fatigue, it was with the presentation of the link as information about CPn of which it has very little.   And the concern that the need for a combination of antibiotics in a protocol such as discussed here is necessary to treat C. Pneumoniae was not part of any of the sparse information about C.Pn. included in the information on their website.     But I'll stop there, I've written it all above for better or worse, depending or how you look at it.

  • 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