This Is MS Multiple Sclerosis Knowledge & Support Community

The Wheldon protocol migh cause more harm than benefits:

"...They showed, again in mice, that gut bacteria are indeed involved in triggering the reaction that causes the body’s immune system to turn against certain nerve cells. ...Clinical trials have indeed shown that probiotics (a mixture of bacteria found, for example, in yogurt) ease the symptoms of people with irritable-bowel syndrome, who often have slightly abnormal gut microbiomes. Whether they can cause a beneficial shift in other people is not known. A paper published last year by Dr Gordon’s group reported that in healthy identical twins the microbiome is unaffected by yogurt; when one twin was asked to eat yogurt regularly for a couple of months while his sibling did not, no change in the microbiome was seen.

...The reason is that many strains are resistant to common antibiotics. That requires wheeling out the heavy artillery of the field, drugs such as vancomycin and metronidazole. These also kill most of the patient’s gut microbiome. ...."

1. bacteria might indeed trigger autoimmunity
2. Metronidazole and other abx prescribed by the Wheldon protocol are heavy drugs killing most of the microbiome.
3. Yogurt and probiotics capsule can not do the repair. A healthy adult human harbours some 100 trillion bacteria in his gut alone. A probiotics capsule contain only a few millions.
4. Probiotics supplements are not regulated by FDA, so no guarantee for content
5. Not regulated sources of abx gives you no guarantee what is in the capsule.

I can not understand why Anecdote gives such an one-sided opinion on abx. I have followed this section for a while, but I noticed that she always plays down any problems that others in the forum raised and did not come out any data on the effectiveness of abx on MS. Doctors have reservation about the long-term use of abx in the Wheldon protocol. I haven't seen any study that refutes that. Is dr. Wheldon a practicing physician? Are you, Anecdote a doctor? Is there any study that shows that the Wheldon protocol is safe and does not harm the microbiome and therefore our natural defence system? ...I do not even mention the results, as I hear only anecdotes, not even a small study is presented.

Liberation wrote:Hi Sarah,

I was just wondering if there are any new materials on abx treatment of MS since we last talked. That time we talked about that I would be happy to connect either your husband or someone from the Vanderbilt team with my neuro who is not against the idea of bacterial infection playing a role in MS. I am sure that an open minded neuro would be able to draw some important conclusions on whom to treat and interpret results with the help of an abx expert.

I would like to see that too. It is very suspicious that not even a small study with results could have been presented so far.

So, I give a one-sided opinion, do I?

I can not understand why Anecdote gives such an one-sided opinion on abx. I have followed this section for a while, but I noticed that she always plays down any problems that others in the forum raised and did not come out any data on the effectiveness of abx on MS. Doctors have reservation about the long-term use of abx in the Wheldon protocol. I haven't seen any study that refutes that. Is dr. Wheldon a practicing physician? Are you, Anecdote a doctor? Is there any study that shows that the Wheldon protocol is safe and does not harm the microbiome and therefore our natural defence system? ...I do not even mention the results, as I hear only anecdotes, not even a small study is presented.

To start with, there is no such thing as the "Wheldon Protocol", He uses a version of Vanderbilt protocol, but he is certainly a registered doctor as can be seen on his website:

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

MB is the British version of the American MD and FRCPath means Fellow of the Royal Society of Pathologists.

His specialty is microbiology, but if you had read David's pages you would know this.

I don't give a one-sided account of anything: I report my own experiences and you know damned well that I am not a physician and have never claimed to be one, I am just glad that I have recovered from something from which I shouldn't have. Why not look a while at the CPn Help site? There you will find other people in a similar position to mine, including a Polish doctor from Chicago.

If you think David is only doing this to make money out of vulnerable people you are wrong: he charges nothing ad ends up out of pocket by spending money on the website, stamps, telephone calls and so on. Gogo, you should be ashamed of yourself.

Sarah, who rues the day when she decided to call herself Anecdote. Take a look at my website where you will see all the new work I couldn't have done if I hadn't taken the antibiotics. You can find it in my profile.

Gogo, I would like to address your points:

• 1. The German research, your Economist article [link] cites [Berer K. Commensal microbiota and myelin... 2011], demonstrated autoimmune susceptibility in EAE-prone mice, which just so happen to be genetically engineered to produce T-cells that are reactive against Myelin Oligodendrocyte Glycoprotein; how cosmopolitan (do I need mention that numerous studies disagree with the EAE mouse model?).
  
  2. Tetracyclines and macrolides are bacteriostatic antibiotics which inhibit protein synthesis. Metronidazole is bacteriocidal and, of course, if you only read Wheldon's website, he maintains that metronidazole should be carefully administered. Moreover, they are not "heavy drugs" but are very common antibiotics. Of course, probiotics are necessary. More necessary is the correct administration to reduce risk of C. pneumoniae persistence.
  
  3. No one (except you) mentioned the use of yogurt for protection of the gut microflora. Enteric-coated probiotic capsules numbering in the billions may be able to do the job (one can purchase a lactobacillus probiotic containing 50 billion organisms). The entire idea of probiotic use is to offset the risk of Clostridium difficile infection. Have you ventured to think that the reason why certain people may develop MS is because of an overgrowth of bacteria in their guts? Why do you think diets have had some limited success (diet: as in a reduction of certain food group consumption; food: as in the eventual make-up of our guts)? Somehow, Berer demonstrated downregulation of induced-autoimmunity after antibiotic administration in their experiments. Likewise, there are plentiful articles on the internet about the positive effects antibiotics have in MS subjects (actual studies in actual subjects). If only you would think, and not be so rude.
  
  4. Correct, there is no FDA supervision of supplement production. However, a common sense experiment can determine the potency of your probiotic. Place two glasses of milk onto your kitchen counter. Then place a few billion organisms (your probiotic) into one glass and place one teaspoon of sugar (placebo) into the second one and monitor what occurs. You don't have to report your results.
  
  5. The US FDA requires bioequivalence studies to be performed on any generic drug introduced into market.

Some news about the auto-immune concept and it's weak points;

"This is very good news and what I am finding elsewhere. The autoimmune concept is BS and the CPn is activating the immune system to find food for the CPn to thrive on, which is inflammation!

Cat’s claw, autoimmunity and Hashimoto’s thyroiditis


Dear Stephen,
I remember reading somewhere that cat’s claw shouldn’t be used in its complete form if you have an autoimmune condition as it stimulates the immune system too much and the TOA free form Samento should be used instead. I have Hashimoto’s thyroiditis. Can you please advise? Also, I would like to express my gratitude to you for your very informative book and website, and for sharing your knowledge so freely with all. I think that it is the sign of a true healer when one is so willing to share and help as many people as possible.

Stephen’s response:
Thank you for your kind words. Regarding lyme and autoimmunity, lyme and ALL the coinfections have an autoimmune dynamic to them, and I pretty much hate the TOA controversy, for reasons that I go into in the book. I think it misplaced. What needs to happen in autoimmune conditions is that the bacteria stimulate the immune system to cause inflammation in the body which then breaks down cellular tissue so that the bacteria can feed on the nutrients that are released. The bacteria in fact create and control a form of autoimmunity, however, THAT WAY OF THINKING ABOUT IT, I.E. AUTOIMMUNITY, IS NOT VERY EFFECTIVE. It is a controlled use of the immune system of the host species to get food, NOT an out of control autoimmunity which is something that happens during cytokine storms in diseases such as severe influenza. So, what you are doing is activating parts of the immune system and deactivating others. The two herbs that accomplish this the best in lyme are cat’s claw and knotweed root. However, Chinese skullcap and cordyceps are also very good for reducing the cytokine cascade, i.e. the “autoimmunity.” As far as I know, cat’s claw is not contraindicated in Hashimoto’s disease. but if you are concerned, use the skullcap and the cordyceps instead.
Stephen"
http://buhnerhealinglyme.com/herbs/cats ... yroiditis/
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On the bacterial ABx use I personally have only seen the concerns of 'people' that there will be risk with long term use. No study or research to back the 'concerns'.
There is lots of studies suggesting that bacteria are able to adapt to ABx by entering the monocyte and macrophage cells and therefore being hidden from the ABx in the blood circulation. How 'immune' the bacteria becomes is based on whether with an ABx protocol an amino acid such as NAC to soften or dissolve the outer cell walls of the CPn cells and then the ABx can easily enter them.
So there is no actual risk study rather the standard comment that further studies are needed. So my view as a person with persistent chronic CPn infection and 'MS' is that I don't have any other option than ABx Protocols, full stop!

The knowledge of bacteria as a co-infection at the earliest stages of disease is growing, a very important example is atherosclerosis and Heart Disease leading to strokes and also Alzhiemers disease,
http://www.theheartattackgerm.com/a%20short6.htm

Regards,
Nigel

Anecdote,
I do not think a patient can be well versed in medicine to cure himself. That is why we have doctors. You say something, then the other one say another thing. I can only say what doctors familiar with the abx is saying that this protocol might be harmful if you take it for years. No doctor whom I talked to can advise taking abx for years, unless you have a strong reason for that.

Others on this site asked you to come out with documents that we can present to our doctors who supervise the abx treatment, but nothing came out from you. So, no indications whose MS might be caused by CPN and no results on the treatment. So, it is quite weak.

You are saying that you are just telling about your own experience. But how can you give advice if you have no medical background and if you only know your case? Just because you did not experience any major sideffects from the abx protocol, does it mean that others will not either?

Talk to a gastroenterologyst and he will tell you what long term use of abx can result in!

I am not against the idea, this is why I have been following this thread, but I have been not convinced to start the protocol as I see that no real help can be obtained here when you are on abx. With any drugs you might experience problems and as an ordinary patient how you can decide what to do and what causes the problem. It is really reckless to say that no problems can occur with taking abx for years. Others already raised the idea of getting more info from the "inventors", but I see no such things happening, even through you.

As for probiotics, they are not regulated by FDA, so it is your luck what you get and how much of the repair they can do.

Gogo, there are two replies between you and I which you seem to have ignored.

I am talking about my own experience although I know many other people who have benefited from abx, but it is not up to me to talk about them: if they just want to get on with their own lives, that is up to them. It would be wrong for me to talk about them behind their backs.

I don't need to talk to a gastroenterologist about antibiotics: my husband knows more than them about this and do you think that he would have prescribed for me if he thought it was dangerous? No, of course not.

I suggest that you track David's recent posts on CPn Help: you might find it illuminating, Also his own website.

I have been writing here and on CPn Help for years and most people are very glad that I do.

Sarah

Gogo, I have one question for you that might help answer all of your concerns;

What is MS and how is it caused?

If you are able to answer this question then I think the concerns you have about ABx will become red herrings. In every field of Medicine there is conflicting information and data.
It all depends on what the focus is for discussion.

The Science of today is indicating that most 'dis-ease' that we are confronting throughout Life comes from unbalanced systems within our body. To pin point one is not going to happen. The Model of Medicine that most Dr's use is based on symptom management rather than finding the imbalances across the whole picture or spectrum of Health, and the time during Life has compounded any simple understanding.

Gogo I get the impression you want a guarantee before you commence any action regarding your 'MS'.

;)
Nigel

This accusatory, ultimately absurd, behavior Gogo is exhibiting merely highlights his lack of critical reasoning skills.

You should argue with all the doctors who think long-term use of abx is not good and not with me. I just highlighted that no information has been put out that can be presented to a doctor who would do the treatment. Nothing on safety, nothing on efficacy. I wanted to start the protocol and I contacted some doctors, but they did not advise it without any material on safety. So, you should reason with them and not with me.

Anecdote: "I am talking about my own experience although I know many other people who have benefited from abx, but it is not up to me to talk about them: if they just want to get on with their own lives, that is up to them. It would be wrong for me to talk about them behind their backs." ...Sorry, but this is the weakest argument I have ever heard. No one told you that you should report their names or bother them, etc., but I would have assumed that after your husband treated you he would have tried to collect info on the efficacy of his treatment with others (without names!!!). Otherwise, how the hell do they know if it helps or not? Only anecdotes??? Then, do not get surprised that no one is funding a clinical trial.

So, if I understand correctly, when smeone does the Wheldon protocol, she wil be free of any side effects of the abx and the abx will not have any side effects, no secondary infections, etc. ...

It is really silly that people who have no experince in medicine (including myself) argue about the use of abx. With all the respect for Anecdote, she is not a doctor, she is an artist. Her husband might be right, we hope he is right, but then the real help would be to have certain supporting materials on the issue. We have only anecdotes...

CuriousRobot wrote:This accusatory, ultimately absurd, behavior Gogo is exhibiting merely highlights his lack of critical reasoning skills.

Robot,

who does the abx treatment? Who prescribes the abx? I guess a doctor. Then, don't you think I should give him some info on what he's doing? They undesrtand that there is no cure for MS, so they might help with such treatment even without clinical trial conducted with abx on MS patients. However, as I said they would need some study on safety of long-term use of abx. As I said no doctor whom I talked to was in favour of such a long treatment.

Is this so hard to understand??? Is it so hard to produce such a material? So, who lacks critical reasonong skills????

You should argue with doctors and not me.

Gogo wrote:So, who lacks critical reasonong skills????

It's quite obvious, Gogo. You can practically find all the material you are asking for on PubMed. Using Wheldon's website (which also includes citations to numerous publications) will direct your search for the appropriate ones. When you have all these nice publications opened in your internet browser and look towards the bottom right, you'll be able to find related works (publications that either cite the main work or comment on it); in other words, more material with which to strengthen your knowledge base. Once you have garnered all this material, the next step would be to book an appointment with an Infectious Disease doctor, who is perfectly comfortable prescribing antibiotics in the long-term, to whom you ultimately have to present this information that you have assembled. If you go to a few doctors who don't specialize in this area, and get turned around or laughed out the door, are you really that surprised that they don't feel comfortable prescribing and monitoring such a patient, being that they only have a cursory knowledge of antibiotic protocols? Your allegiance towards the concept of "incurable" autoimmune-driven MS, reverence for doctors (as if they contain some especial knowledge that non-MDs cannot comprehend; after all, what were they prior to becoming Doctors of Medicine [certainly not originating from a social caste one has to be born into]) and caustic attitude towards Sarah and the others here totally illustrate not only your lack of critical reasoning skills but intelligence as well.

I am another person who has benefitted from the antibiotic protocol. I followed the Vanderbilt protocol prescribed for me by a neurologist at Vanderbilt. I have had great success. I used to blog about it on both This Is MS and CPn Help.org. I rarely do anymore, mostly because of posters like Gogo. Sir, either try the protocol or don't. It is no guarantee (I don't think anyone said it was). But instead of bashing Anecdote spend the time learning and reading about the protocol on CPn Help.org. I understand the concern regarding long term use of antibiotics. I also understand the progression of MS. I, as well as many others, have made educated decisions to go with the the risk of the first in the hopes of halting the second. This therapy is not for everyone. A person must be fully dedicated and on board with all the ups and downs they will encounter. I determined this was the therapy I wanted to go with. I would never question someone else on their decision to go a different route. Anecdote has been tremendous help to me and to many others. Never once did she make any promises that I would receive the same results as she did. And I still have not seen her do that to anyone else. She talks about her own experiences. I have appreciated her help and her willingness to answer questions. Gogo if this therapy is not right for you then I wish you luck in finding one that you feel comfortable with. But stop badgering Anecdote. Instead go find what works for you.

CuriousRobot wrote:Your allegiance towards the concept of "incurable" autoimmune-driven MS, reverence for doctors (as if they contain some especial knowledge that non-MDs cannot comprehend; after all, what were they prior to becoming Doctors of Medicine [certainly not originating from a social caste one has to be born into]) and caustic attitude towards Sarah and the others here totally illustrate not only your lack of critical reasoning skills but intelligence as well.

[color=blue]Arron[/color] wrote:Personal attacks, which can consist of slightly veiled innuendo or sarcastic comments aimed at the poster as opposed to the content of the post, are not tolerated at This is MS. We of course reserve the right to ban or suspend any member who violates this rule.

NHE

You are absolutely correct and my personal attack was uncalled for.