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I think the worst personal attack came from Gogo......................Sarah

Anecdote wrote:I think the worst personal attack came from Gogo......................Sarah

Madam,

So, asking for some evidence means attacking someone???

Anyone talked to any doctor about the the long term use of abx before starting the protocol? I have not tried the protocol but I think taking any prescription drugs for a log time would require the supervision of a doctor. If Dr. Wheldon treated many patients succesfully, why there is no any aggregated result published on the treated patients? This would not break any confidentiality. Is there any neuro verifying any improvements? Sorry, if I could not find any serious materials on the net, but then why no one can post them here if they exist?

Madam, how can you advise people based on only one person's experience? Did you read the warnings in the notes of any abx? If you were ok with abx, does it mean that all the other people will not experience any side effects? One case not even establish any causative relationship between the bacteria and MS. It would realy matter to draw any conclusion whether 1 out of 100 patients experienced improvements or 70 or 80 out of 100. Also whether the improvements are part of the natural course of MS or really caused by abx. That is something that only a neuro can verify.

If I know correctly, only at Vanderbilt do they have a complete team including microbiologist and neuro as well who can properly interpret any results of the use of abx. I haven't seen any conclusive results from them. Which group of MS patients benefit? How can patients with axon or myelin loss do after treatment? How can you detect CPN infection in a patient? How can you protect gut flora if there is no any FDA approved probiotics for completely defending it?

In Croatia, I contacted several doctors about using abx for such a long time, but no one was supporting it without any hard evidence. Even if there are some cases when abx is used for a long time, you can be sure that it is required and administered cautiously.

I can understand that any drug treatment has its side effects, but then at least some evidence would be needed that the treatment beneficial for the patient.

Instead of name calling, would you or others please post some recent materials on the above? Many of us would greatly appreciate it.

Well, perhaps you could ask some of these other people to ask the same question that you keep coming up with.

Sarah.

(and I don't just want Liberation: I already exchange emails with him.)

Gogo, also if you take it upon yourself to actually read David's extremely well referenced pages you will find most of what you want to know.

And please don't call me Madam: to an English person it is very insulting.

Sarah

Gogo I think that you would learn more if you use the same tactic with you Dr's as you are using with the members here.
If your Dr's can come up with supporting literature to their concerns regarding the Wheldon Protocl then I think you will have more balance in your personal quest.

Understanding the ABx use and why there is a timed and gradual protocol will answer most of the ABx fears, sites such as CPn Help will cover the life cycle of CPn and also the reasons that the ABx protocol is structured for the patients care as much as the management of the Bacterial Load. There are lots of reasons for Dr's to be wary of ABx use if it not guided by a Microbiologists understandings and experiences with the cellular processes. A general Dr will have no idea of the fine details and outcomes or the precautions that are used in the Wheldon Protocol, therefore they are not the 'best' option for advise on this matter in particular.

Whether you are seeking advise on CPn infection and understanding or Lyme Disease or other co-infections with Lyme disease there are very few Dr's that have any experience or experience and training in bacterial infections.
The Stealth Bacteria insights are only just developing and it will be years or decades before money is channelled into the studies and research to educate mainstream Dr's and establish accepted treatment methods.

People with Lyme disease are in exactly the same predicament wanting details and results to plan their treatments and they to are unable to get concrete answers, they can try the methods that are having successes at present rather than wait.

The choice is yours Gogo!
Hassling Sarah and David is not going anywhere for you, they don't have the answers or the finances to get answers!
Put your money towards research or try the protocol and record your own journey!

;)
Nigel

NZer1 wrote: The choice is yours Gogo!
Hassling Sarah and David is not going anywhere for you, they don't have the answers or the finances to get answers!
Put your money towards research or try the protocol and record your own journey!

;)
Nigel

My dear friend, Nigel, taking abx or any other drugs for years should not be solely the coice of a patient. It is not a journey. If Prof. Wheldon and others really treated MS patients for years why can't we see anything about their experiences. I see only excuses about lack of funding, but it would not take any money to report that roughly X% of the treated patients showed this an this benefits. There are different types of MS, so it would be useful to know what are the experiences with them when they were treated with abx.

Gogo I think that you would learn more if you use the same tactic with you Dr's as you are using with the members here.
If your Dr's can come up with supporting literature to their concerns regarding the Wheldon Protocl then I think you will have more balance in your personal quest.

Understanding the Abx use and why there is a timed and gradual protocol will answer most of the ABx fears, sites such as CPn Help will cover the life cycle of CPn and also the reasons that the ABx protocol is structured for the patients care as much as the management of the Bacterial Load. There are lots of reasons for Dr's to be wary of ABx use if it not guided by a Microbiologists understandings and experiences with the cellular processes. A general Dr will have no idea of the fine details and outcomes or the precautions that are used in the Wheldon Protocol, therefore they are not the 'best' option for advise on this matter in particular.

Nigel, this is not a dispute between doctors. Taking abx for many years is not common. Doctors rely on their own experience and protocols which are established for certain illnesses. No one disputes Prof. Wheldon's hypothesis. They only want some supporting info in order to start a treatment for an MS patient. There are doctors who treat Lyme, dermathological problems, urinary problems and they have experience with abx.

It is just a common sense that before taking abx for several years a patient and her doctor would like to see some data from Prof Wheldon or the guys from Vanderbilt. Why is it such a big problem to see any pilot results on efficacy and safty?

Gogo, the way you put this situation, you have, tells us all you don't want to use ABx for treatment.

Why then are you pushing uphill with a very sharp stick?

Gogo, have you been confirmed as having a Bacterial infection and is it a singular Bacteria strain or a co-infection?

Gogo, have you looked at the Herbal approaches, I see that Stephen Buhner http://buhnerhealinglyme.com/co-infecti ... porphyria/
is about to put out a second or updated book on Lyme and Co-infections in the very near future. I have spoken with him about the options for CPn treatment and asked his opinion of the Herbal approaches for any of the Bacterial MS mimics or MS mimics of Bacterials.

Another very good source of Biological Medicine methods is David Jernigan in Kansas, https://www.facebook.com/doctordavidjernigan?fref=ts
he is another alternative treatment provider with great successes and is very open and easy to talk to.

Another source of unfolding Stealth Infection Awareness is from Bec Millar on
https://www.facebook.com/beyondthebandaid?fref=ts
Bec has gone around the globe and videoed interviews with people such as Prof Nicholson and is given some very good insights on the breadth of the challenges from Bacterial Infections. She is also approachable for information on the complexity and challenges of treating the unknown!

Gogo your concerns are grounded, the challenge is to find your answers from looking at all avenues, if ABx doesn't appeal, then the Herbal may attract you, or the multifaceted Biological Medicine approaches might be appealing.

Hope this helps you find the answers you are looking for because they are not with ABx Protocols from Sarah or David and not from Stratton/Vanderbilt or Thibault either.

Please come back and share your findings, we will all be able to learn from your search.

;)
Nigel

NZer1 wrote:Gogo, the way you put this situation, you have, tells us all you don't want to use ABx for treatment.

Why then are you pushing uphill with a very sharp stick?

Gogo, have you been confirmed as having a Bacterial infection and is it a singular Bacteria strain or a co-infection?

Gogo, have you looked at the Herbal approaches, I see that Stephen Buhner http://buhnerhealinglyme.com/co-infecti ... porphyria/
is about to put out a second or updated book on Lyme and Co-infections in the very near future. I have spoken with him about the options for CPn treatment and asked his opinion of the Herbal approaches for any of the Bacterial MS mimics or MS mimics of Bacterials.

Another very good source of Biological Medicine methods is David Jernigan in Kansas, https://www.facebook.com/doctordavidjernigan?fref=ts
he is another alternative treatment provider with great successes and is very open and easy to talk to.

Another source of unfolding Stealth Infection Awareness is from Bec Millar on
https://www.facebook.com/beyondthebandaid?fref=ts
Bec has gone around the globe and videoed interviews with people such as Prof Nicholson and is given some very good insights on the breadth of the challenges from Bacterial Infections. She is also approachable for information on the complexity and challenges of treating the unknown!

Gogo your concerns are grounded, the challenge is to find your answers from looking at all avenues, if ABx doesn't appeal, then the Herbal may attract you, or the multifaceted Biological Medicine approaches might be appealing.

Hope this helps you find the answers you are looking for because they are not with ABx Protocols from Sarah or David and not from Stratton/Vanderbilt or Thibault either.

Please come back and share your findings, we will all be able to learn from your search.

;)
Nigel

Hello Nigel,

thanks for the info. It is not about the appeal of abx. It is the lack of info coming out from those doctors who treat MS patients with abx. I understand that they wanna avoid limelight as it is not an approved therapy for MS, but not giving any info to those doctors privately who might wanna help MS patients just makes me think why.

I do not believe that herbal stuff would halt progression of MS. If you look at the history of medicine you will see that the lack of effectiveness of herbal stuff lead to the development of drugs. Don't you think if a cure would be as simple as drinking some herbal tea then drug companies would not exist? But, I wish I am wrong on this.

I can imagine that some drugs already available on the market (even abx) might have an immunmodulatory or neuroprotective effect or any other positive impact on MS, but I also think that before taking them at least the treating doctor should know who are those patients who most likely benefit from a treatment. This way we can avoid unneccessary side effects. That is what I really miss here with abx. If a doctor treated many MS patients with abx and there is feedback from neurologists how they faired then some info could have been gathered. This whole abx treatment just intentionally covered by mistery. )There are some self claimed improvements that have never been confirmed by neuros and no doctors say anything about their experiences. With Lyme I can see doctors identified symptoms attributed to it, also there are drugs for it and their effectiveness is experienced by the doctors. With CPN, all these are secret. Don't tell me that Vanderbilt doctors or Dr Wheldon have no data after treating quite a few patients! ) This way this whole concept is just as well founded as the inclined bed.

Gogo, have you been confirmed as having a Bacterial infection and is it a singular Bacteria strain or a co-infection?

They did a test for CPN, but it was negative.

Anecdote wrote:Gogo, also if you take it upon yourself to actually read David's extremely well referenced pages you will find most of what you want to know.

And please don't call me Madam: to an English person it is very insulting.

Sarah

Sorry, Anecdote. It might have missed my attantion. Can you post the relevant parts, such as who most likely benefit and what are David's experiences, some numbers? I am sure it woul help others too. I would assume that there are more than a few patients who were treated.

Don't take it hostile, but you must understand that if there is a doctor who is willing to prescribe abx at least he wanna know more about experiences with the abx for MS. My Cpn test was negative and my doctor would not start such a long abx treatement only based on one person's story.

I understand that dr Wheldon started your treatment based on a hypothesis, but since then there must be experiences with more patients gathered.

Gogo there are no short cuts, you will have to find what you need, from the links below, for your purpose or talk directly with someone who is providing Rx's.
I was lucky to find, travel and meet with Paul Thibault in Australia and now I have established a support group online (fb closed private group) of NZ patients plus Paul, so we can converse and learn daily if we choose.

Read on,
;)
Nigel


http://www.davidwheldon.co.uk/ms-treatment.html

CPn Help/

http://www.google.com/patents/US6756369

Preliminary summary of work-in-progress:

METRONIDAZOLE: A KEY COMPONENT OF A REGIMEN FOR THE TREATMENT OF PERSISTENT CHLAMYDOPHILA (CHLAMYDIA) PNEUMONIAE INFECTION. David B. Wheldon(a) and Charles W. Stratton(b)

(a) Consultant Medical Microbiologist, Department of Medical Microbiology, Bedford Hospital, Kempston Road, Bedford, UK MK42 9DJ.
(b) Associate Professor of Pathology, The Vanderbilt Clinic 4524-TVC, Vanderbilt University Medical Center, 21st & Edgehill St. Nashville, TN.

Diagnosis and treatment of chronic persistent infections with Chlamydia pneumoniae are both problematic. This is important because evidence is accumulating that this organism has input into serious multisystem diseases. The authors examine the dynamic of chronic persistent infections with Chlamydia pneumoniae and suggest that a host tryptophan starvation strategy together with the administration of protein-synthesis inhibitors may drive the organism into a sluggish metabolic state which relies on anaerobic pathways. They draw parallels with other intracellular pathogens (e.g. Mycobacterium tuberculosis) which are known to do this. Organisms in this state would be expected to be killed by metronidazole. The authors anticipate that, as chlamydiae possess endotoxins, cidal treatment should bring about symptoms of endotoxaemia. Seven patients with symptoms suggestive of chronic persistent Chlamydia pneumoniae infection (five of them with positive IF serology) were treated with doxycycline and a macrolide. When metronidazole was added to the regimen the patients developed chills, sweats and other symptoms suggestive of mild endotoxic reactions. The authors make the point that these reactions continued after the metronidazole had been discontinued, suggesting a) treatment may purge immune system cells (known to be a target of Chlamydia pneumoniae) of the organism, and b) may have opened up the constitution of the organism to the host immune system. The study is flawed by the fact that it is retrospective, and that endotoxin assay (which is not a routine examination) was not undertaken.

I have "bolded" the most relevant phrase in this preliminary abstract, which may explain why this specific research has not been published.

...

From David Wheldon, himself, on CPn Help.org:

Clinical outcomes. Here is a summary of the clinical outcome of treatment on the ten patients seen in my laboratory, with established progressive MS (or progressive neurological illness with MS-like features.) The diagnosis of MS was made at consultant neurologist level.

10 patients were seen and received treatment and were followed up.

In 7 of these progression of the disease was halted.
In all 7 there was some resolution of symptoms.
In all 7 resolution continues.
6 of these 7 patients had cognitive deficits; these were reversed in all 6.

In 3 of the 10 patients progression continued despite 6M treatment.
In 1 of these patients there was little doubt over compliance with medication.
In 2 of these patients compliance with medication was doubtful.

Acute relapse was seen in no patient.

It is a very small number. It includes only those patients seen and followed up on at least three occasions by myself, so does not include self-reporting or anecdotal cases. (It should be borne in mind that the natural history of progressive disease is towards deterioration: although there may be plateaux of stability, the likelihood of a spontaneous global remission is very slim.) David

Again, I have "bolded" the most relevant statement.

Yet... there is something published: link to paper.

(http://www.ncbi.nlm.nih.gov/pubmed/17882356)


Also: http://www.davidwheldon.co.uk/peer-review.html

So read.

Thanks, Nigel and Curious. These are useful info. My cpn test was negative. So, am I right that cpn is not the likely culprit in my case? I would thank any papers that you might know on the subject and deals with the efficacy of abx and how we can identify those whose MS symptoms might be caused by cpn.

Nigel, isn't dr Tibault is in the CCSVI business? CCSVI seems not a major issue in MS. It is more of a hype and some IR makes hell of a money from this. Any doctor experienced with the Wheldon protocol in the support group?

Gogo there are no short cuts, you will have to find what you need, from the links below, for your purpose or talk directly with someone who is providing Rx's.

I must admit I am not a doctor and I do not have such ambitions. I also do not want to pretend that I know as much about medicine as a doctor. So, I would rathr collect papers on the subject and discuss them with my doctor before starting any drug treatment. The papers that Curious posted were goodd ones. Any more like these would be useful not only for me but for others reading this forum as well.

I would have assumed that dr Wheldon has more info on the subject and Anecdote would share with us, but I have not seen any tangible from her in this forum. I guess that at Vanderbilt and Wheldon together treated more than 10 progressive patients since the report posted here. The results of the paper was really intriguing, so more on this would be really great.

Gogo creating 'papers' for people to read are much more challenging than you assume. The time and the patient permission and recording and measurement of anything is a huge task. You are either into that side of medicine or you are out there doing it and learning through experiences.

The CPn blood testing is not definitive and you will find that out when you read up on sites such as the ones you have been given.

One tip we were given was to use 1200mg NAC night and morning for 7-10 days and note if you have symptom changes. This is a self test for CPn and is talked about by Dr Wheldon. Have you done this?

The second test is to start on eg Doxy and Roxy ABx night and morning and then introduce the third ABx after a couple of weeks and then have blood tests again after being on the third ABx for a month. It is more accurate regarding antigens than a standard test. Have you done this?

Dr Thibault is contactable by email if you want to learn more about him and about CPn investigations he is doing.

Gogo if you are wanting to know about CPn you are going to have to educate yourself by reading the links provided, anything you 'hear' on forum sites is going to be opinion, and you seem to want more than opinion.
Your request for people such as the Wheldons to 'share' is absurd, the info is in the links you have been provided and you will have to make the effort to go through it, there is lots there and many insights that will educate you.

;)
Nigel

Gogo, I imagine you are ill and frightened because you feel you are getting worse.I was that way when I started treatment. Now, since the nineteen sixties, MS has become known as an auto-immune disease whereas before neurologists were willing to believe that it was maybe caused by an infection. It's one thing believing that but totally something else to know what the infection is.

In the nineteen sixties, Chlamydia pneumoniae was known about but was not known to cause anything more than a walking pneumonia.

If you read page one of David's MS site you will see that he talks about the historical Vanderbilt trial and how people responded. The second one had to be stopped because too many people dropped out, being charmed away by the newest of auto-immune drugs. Neither of them included metronidazole, though: suppliers of money for trials want quick results and you don't get that with this treatment.

I could say that out of the more than a hundred people that my husband has treated who have SPMS, three quarters have stopped progression ad many of these have improved, but not being part of a trial, there is no proof.


Maybe one day he and Stratton will write this all up as a case note study, but maybe for the moment there are more important things to do.

Now, you say that taking drugs for years should not be solely the choice of the patient, but I disagree: nobody can be forced to take anything and it is a great pity that so many people drop out of taking long-term treatment for tuberculosis, but they can't be forced to take the stuff, more is the pity, so TB remains as a constant threat to any people.

Sarah

NZer1 wrote: The CPn blood testing is not definitive and you will find that out when you read up on sites such as the ones you have been given.

One tip we were given was to use 1200mg NAC night and morning for 7-10 days and note if you have symptom changes. This is a self test for CPn and is talked about by Dr Wheldon. Have you done this?

The second test is to start on eg Doxy and Roxy ABx night and morning and then introduce the third ABx after a couple of weeks and then have blood tests again after being on the third ABx for a month. It is more accurate regarding antigens than a standard test. Have you done this?

Dr Thibault is contactable by email if you want to learn more about him and about CPn investigations he is doing.

Thank you, Nigel. Sorry for the questions, but I am Croatian and my English is not as good to read hundreds of pages. I am also afraid that me and my doctor might miss something in the CPN book as it is very long and info is scattered in it.

Any info like these would help me and my doctor make a decision on starting the protocol. I did not mean only verified, reviewed papers. I think any papers written by those doctors who have experience with abx would be useful. When I read papers on different types of MS, I have recognized that the underlying proccesses going on in them is totally different. So, even neurologists say that these are like different illnesses. That is why I thought it would be very useful to see what are the expereinces with different MS. Not against abx, but I think we sould avoid any drugs if it is not necessary. Otherwise, of course, we should take them.

As for NAC, what kind of symptom changes should I notice?

As for the blood test, if I get it before starting the treatment and after doing the third abx for a month, what should I notice? Should it be positive? I had only one blood test that was negative and I have not started the abx regimen.