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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.

Anecdote, if dr Wheldon or guys at Vanderbilt says so, that is a proof. I do not think that with such a serious illness like PPMS or SPMS we should wait years to state something based on clinical trials. E.g. everyone knows how progressive patients control groups performed in other clinical trials ( close to zero). So 75% is much better. If he has any experience with PPMS patients I would be grateful for that. How did they do? I am 35 and have PPMS.

Anecdote wrote: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

Did your husband or at Vanderbilt where they have neurologist on board have any opinion on connection with PPMS? As far as I see the pathogenesis of PPMS is totally different from the other types. Any experience on what symptoms or signs might suggest that someone's MS might be caused by CPN or other infection? As you know PPMS patients have no inflammation, no flair-ups

I am asking all these questions as I think only dr Wheldon and the Vanderbilt team have knowledge and experience in this subject. I think even without clinical trials we can conclude things. In medical history things were based on experience and not clinical trials. Imagine Hippocrates and others doing clinical trials! They still did much more for their patients than neuros today. So, I greatly value the experince of Dr Wheldon and others and I would be happy getting any info from them

Here's an article on it:
http://espace.library.uq.edu.au/eserv.p ... 1_7_04.pdf

Gogo, you seem to have continued interest in antibiotic therapy but want to have proof that it works. I have been going to Vanderbilt for over 4 years. The bottom line is the therapy works for some people and not for others. For those whom it has worked they continue on as they see the therapy as hope. For those whom the therapy did not work there are many reasons. Some could not afford to continue on the antibiotics for the period of time needed (that time varies from patient to patient). Some did not see results in the amount of time they were willing to give the therapy. Some chose a different path. There are no guarantees and no one will say that there are. Most drugs' mechanism of action is unknown. The same is with antibiotics. No one knows definitively why they work. I don't know where you are located but if you are in the United States perhaps you would be best served to make a trip to Vanderbilt, ask the questions you have and decide if this therapy is right for you. If you are not in the US or England (to see Dr Wheldon) then you are just going to have to decide for yourself if you want to take the plunge. I will add, though, that if you do decide to proceed with antibiotic therapy that you give the therapy a full chance to help. Do not quit too early if you do not see immediate improvement, or even if you initially see worsening of symptoms for a while. That seems to be the nature-one step forward, two steps back! One of the suggestions I have seen is to take n-acetyl choline (NAC) initially to see if you have any reaction. Often if you do have a reaction that will indicate that perhaps antibiotics may be beneficial. That product is available over-the-counter. I wish you all the best in your quest.

Gogo I don't the full answers you need and I see how that language and location is going to make your decisions harder.
The link is to David Wheldons site. I buy on the Net from Vitacost and they deliver within about 10 days, very good prices.

Quote from http://www.davidwheldon.co.uk/NAC.html
"The NAC Test

One indirect indicator of chronic infection with this organism is the N-acetyl cysteine test. This relies on the ability of NAC to rupture the extracellular Elementary Body by opening up surface disulphide bonds in the organism’s geodesic coat, as described above. The EB opens and perishes. The release of naked bacterial components causes local inflammatory symptoms. Because EBs are more numerous in primary respiratory infections, the acellular load of EBs is likely to be highest around respiratory structures. In a positive NAC test the daily administration of 2.4 G of NAC will cause, after a few days, sinusitis-like symptoms, with watery mucous; also a cough productive of a clear, moderately viscous sputum. Systemic symptoms — 'NAC flu' — may also occur. If symptoms are severe, the dose of NAC may be cut down to 600mg and slowly built up as may be tolerated. Symptoms wane, sometimes quickly, after a few days if the chlamydial load is small; if the load is large they may continue for a month or more as the EBs are destroyed and their remains removed by the immune system. As far as I am aware, NAC is unlikely to produce die-off reactions with any other genus."

Starting on the protocol and then having blood tests will also give similar symptom indications if there is an infection of CPn and the timing of the blood test is based on waiting for your body to produce the antigens that the blood test is looking for. The blood tests are not perfect and probably only 40-60% accurate depending on the Labs.

If you have been on other drugs or taking certain herbs the CPn will go dormant and is impossible to detect and that is why the two tests above are more likely to be accurate and find if there is one or two of the life stages present at any one time.

Hope this helps, I see you have other replies as well
Nigel

Loriyas wrote:Gogo, you seem to have continued interest in antibiotic therapy but want to have proof that it works. I have been going to Vanderbilt for over 4 years. The bottom line is the therapy works for some people and not for others. For those whom it has worked they continue on as they see the therapy as hope. For those whom the therapy did not work there are many reasons. Some could not afford to continue on the antibiotics for the period of time needed (that time varies from patient to patient). Some did not see results in the amount of time they were willing to give the therapy. Some chose a different path. There are no guarantees and no one will say that there are. Most drugs' mechanism of action is unknown. The same is with antibiotics. No one knows definitively why they work. I don't know where you are located but if you are in the United States perhaps you would be best served to make a trip to Vanderbilt, ask the questions you have and decide if this therapy is right for you. If you are not in the US or England (to see Dr Wheldon) then you are just going to have to decide for yourself if you want to take the plunge. I will add, though, that if you do decide to proceed with antibiotic therapy that you give the therapy a full chance to help. Do not quit too early if you do not see immediate improvement, or even if you initially see worsening of symptoms for a while. That seems to be the nature-one step forward, two steps back! One of the suggestions I have seen is to take n-acetyl choline (NAC) initially to see if you have any reaction. Often if you do have a reaction that will indicate that perhaps antibiotics may be beneficial. That product is available over-the-counter. I wish you all the best in your quest.

Thank you Loriyas for your frank answer. I am in Croatia, so both the USA and England are far away. When you were at Vanderbilt, did they have any theory based on their experience how it works and who might benefit? The reason why I am asking is that it seems to me that PPMS and RRMS are two different illnesses and it is very sloppy when even neurologists refer to them as MS. The whole mechanisms of them are very different. This is why drugs working for RRMS do not work for PPMS. So, I just thought that different neuro symptoms and identified characteristics of MS might imply different causes, like bacteria. E.g. if abx works for its immunmodulatory effect then it is not likely to work for PPMS as autoimmunity is not the major problem there.

I think patients are pressed for time due to the nature of the disease, this is why many can not stick to one treatment for a long time if they can not see results. Even here in tims, you can see too many "treatments" that are not proven, so if you wanna try all of them, one life would be not enough for it.

As for NAC, I do not understand what reaction should I experience. Acetyl cystein is very commonly used here by doctors when you have a cold for decreasing the viscosity of the thick mucous. I used it almost every winter. The only thing I noticed that it helped for that.

I would really appreciate your comments and if you could share with us your experience with Vanderbilt and what you heard there from doctors. As far as I see Dr Wheldon and the Vanderbilt team are the ones who have valuable experience in the subject. What type of MS do you have? How are you doing with the protocol? What do they say about side effects?

I am thinking about abx and FMT too. I think Liberation talked about FMT in this forum. I can not decide yet. If I start abx, then I can not do FMT for a long time. Time is a big problem with this stupid disease.

NZer1 wrote:"The NAC Test

One indirect indicator of chronic infection with this organism is the N-acetyl cysteine test. This relies on the ability of NAC to rupture the extracellular Elementary Body by opening up surface disulphide bonds in the organism’s geodesic coat, as described above. The EB opens and perishes. The release of naked bacterial components causes local inflammatory symptoms. Because EBs are more numerous in primary respiratory infections, the acellular load of EBs is likely to be highest around respiratory structures. In a positive NAC test the daily administration of 2.4 G of NAC will cause, after a few days, sinusitis-like symptoms, with watery mucous; also a cough productive of a clear, moderately viscous sputum. Systemic symptoms — 'NAC flu' — may also occur. If symptoms are severe, the dose of NAC may be cut down to 600mg and slowly built up as may be tolerated. Symptoms wane, sometimes quickly, after a few days if the chlamydial load is small; if the load is large they may continue for a month or more as the EBs are destroyed and their remains removed by the immune system. As far as I am aware, NAC is unlikely to produce die-off reactions with any other genus."
Nigel

Thanks, Nigel. Acetyl cystein is very commonly used here by doctors when you have a cold for decreasing the viscosity of the thick mucous. I used it almost every winter. Isn't this reaction attributed to this property? I think it will be hard to identify for me. I have this mucous thing even right now without NAC.

Didn't they try to approach this thing from the other side? As I wrote earlier the characteristics of RRMS/SPMS and PPMS are very different, like two different diseases. So, I would assume that they might have different causes.

This article from another thread here is very good for explaining what we learning.

From http://www.personalconsult.com/articles ... event.html

Anecdote/Sarah,
Could you and David make comment about the Lyme and other co-infections and the incidence with a positive CPn test please.
I am looking all the time for info on my condition and because I am struggling with the treatment reactions I am going through I am ASSUMING that there may be other infections involved in my 'disease'.

I wonder if the Protocol that I am on (NAC, Doxycycline 100mg, Roxithromycin 150mg and Ornidazole 500mg plus supplements and diet) will be able to 'treat' any other co-infections or if I need to find a 'specialist' who can test for the spectrum of other bacteria etc?

;)
Nigel

Gogo, here is a thought for you: maybe the pathogen causing the thick mucous is C pn.

I started taking the stuff when I had been on the treatment for over a year and the only reaction I got was a very runny nose. David, however, who had suffered from bad sinusitis as a child felt awful for a few days and experienced something like the return of his childhood sinusitis before it went, never to return.
I think it very good that it is give to many people in the winter months in Croatia: this should be more common.

Sarah

Nigel, if you think you might have other infections, the best thing surely is to get yourself tested. Apparently I was tested for lyme but nothing was found. No surprise there because as far as I am aware lyme disease involves pain, which I have never had.

If you do have lyme, what you are taking should be sufficient according to doctors like David, although some doctors would disagree and put you on IV antibiotics or whatever else.

Personally, I think that MS is far worse than lyme and lyme only causes something which might look like MS, so get rid of the MS first then see how you are. You might be surprised.

Sarah

Anecdote wrote:Gogo, here is a thought for you: maybe the pathogen causing the thick mucous is C pn.

I started taking the stuff when I had been on the treatment for over a year and the only reaction I got was a very runny nose. David, however, who had suffered from bad sinusitis as a child felt awful for a few days and experienced something like the return of his childhood sinusitis before it went, never to return.
I think it very good that it is give to many people in the winter months in Croatia: this should be more common.

Sarah

Thanks. If I understand correctly, I sould take 1200 mg of NAC in the evening and 1200 mg in the morning for 10 to 14 days and if I have running nose then I have CPN. Is that right? What other symptoms?

Anecdote, did the 75% succes rate stand for PPMS patients as well? Roughly, how many patients of them benefited and how many not?

Oh Gogo, I only said that the mucus may be caused by C pn! However, since it is now known to be such a common pathogen, I think it is caused by that.

My level of C pn was so low that most doctors would not have thought it worth treating. However, that was in my blood stream, not my brain. David thought it worth trying and I responded. I didn't think it would work:it was just another hair brained scheme. I was wrong, luckily.

David sees more people with SPMS or PPMS because relapsing people have plenty of options offered by their neurologist, He thinks that PPMS is largely the same disease, but with most lesions in the spinal cord.

The most successful person with PPMS is Katman from both here and the other site. I think she is over 70 now and two years ago she climbed a ladder to repair the roof of their barn, where they rear dairy goats.

Gogo I have kept a log on both this site and on CPn Help.org. It is entitled loriyas antibiotic log. You can read about my experience with antibiotic therapy there. I will be going to Vanderbilt for a yearly appointment in July. I will update then.

Gogo, You said you don't know what you should experience with NAC. The reaction is usually similar to early flu symptoms: runny nose, aching muscles, fatigue, temperature fluctuations, etc. In some people, the reaction is noticeable. In some, it is minor (I experienced a runny nose and a barely discernible 'feeling' of body temperature fluctuation. If I wasn't paying close attention, I doubt I'd have noticed it.)

Loriyas, you know I respect you and we are friends, but I disagree that no one knows the mechanism of how antibiotics work against cpn. Dr. Wheldon's site spells it out pretty clearly. I'm not science-minded enough to summarize it here, but DW explains it simply enough that I was satisfied six years ago and felt the science was valid.

Gogo, I started abx within two months of being diagnosed with MS. I was failing quickly, with new MS symptoms every day or two. I don't think I'd be a functional human being, or perhaps not alive at all, without the antibiotic protocol. Why not start the protocol immediately, then use the next year to shop around for other treatments WHILE you treat with antibiotics? That way, you'll be making progress on TWO battlefields. You can weigh the benefits of one against the other at the end of a year's trial.

Anecdote wrote:
David sees more people with SPMS or PPMS because relapsing people have plenty of options offered by their neurologist, He thinks that PPMS is largely the same disease, but with most lesions in the spinal cord.

Thank you, Anecdote. I see papers on CPN that is convincing how CPN is working as a bacteria inside our body, but I can not see the link between MS and Cpn. We have lots of info on the different types of MS. That is a fact that DMDs help RRMS patients, so autoimmunity is present there. That also is a fact that PPMS patients who have no active lesions do not respond to such drugs. Also, HSCT stem cell treatment cured not many, but most of the RRMS patients who had autoimmunity. All these things do not question the validity of bacteri involvement, but I can not see any documents on linking MS types and Cpn. Just as, if you are PPMS you are not advised to get HSCT, as it won't help you, I would have expected more of such info with Cpn. So, something is going really different in PPMS and SPMS patients, not just the spinal cord lesions.

The take abx and we'll see what happens approach might not be useful. You said it before, most people gave up on abx when in trial. Even PPMS patients can consider several options, such as stem cells, different drugs, chemos currently on trial, FMT, diets, etc. You can not do them at the same time. E.g. FMT and abx fully beats each other. So, you have to chose.

MacKintosh wrote:
Loriyas, you know I respect you and we are friends, but I disagree that no one knows the mechanism of how antibiotics work against cpn. Dr. Wheldon's site spells it out pretty clearly. I'm not science-minded enough to summarize it here, but DW explains it simply enough that I was satisfied six years ago and felt the science was valid.

.

MacKintosh,
how do you know that the MS patient has Cpn infection? They did a blood test for me but no Cpn was indicated.
Abx might work, but maybe for a different reason. Also, how about those who did not benefit from abx? I have not seen any paper on the success rate. Small group studies can be very misleading.
Is there any paper that links Cpn to different MS types? As you know very different things are going on with different MS patients. Just like they were different illnesses.

You might consider they are not different illnesses, just because they progress at varied rates. They are more likely different manifestations of the same illness, much as some of us don't get terribly ill when we have the flu. Some get aches and pains, some vomit, some don't, some recover more quickly than others....

It's more likely that a cpn infection, coupled with one's genetic make-up, one's general health, one's diet, one's environment, one's ability to process vitamins, the location or severity of the infection, etc., are the issues that dictate whether a cpn infection manifests itself as any classification of MS, chronic fatigue, irritable bowel, rosacea, or any number of so-called 'autoimmune' diseases.