This Is MS Multiple Sclerosis Knowledge & Support Community

CoB,

I was on Amantadine for about a year for the fatigue. Then added Provigil to the mix for another year.

For awhile the combo worked and then lost effectiveness. I've now given up on both of those and am now on Ritalin-SR.

I started that two months ago and quite please with the effects so far. Brain-fog is very slight.

I wish you well and good luck in your efforts to combat your fatigue!!

-- Niko

Hi Sarah, Thanks for that information on amantadine. Steve has already been taking acetyl L-carnitine for months, and it proved to be more effective than the provigil he had been taking. Fatigue is not the main reason Steve's doc is prescribing the amantadine, though, it's for the antiviral benefit along with the valtrex. Steve is blessed never to have noticed any of the mentioned side effects. That's not to say that they weren't there, but that, if they were there, they blended into the existing MS landscape too well to detect or that they were nullified by other medications.

One particular side effect listed interests me very much: insomnia. The doc prescribed Lunesta from the beginning since poor sleep plagued Steve's nights. Also, insufficient restorative phase sleep in MSers and the resulting deficits are an area of focus for this doc. I have to say that the improved sleep Steve is getting seems to help. Anyway, as Steve gets better, we occasionally will be testing the sleep issue by abstinence from Lunesta. The information you provided indicates a shift from taking amantadine in the evening (as he does now) to the morning. In any case, these antivirals are in his life for only 6 months---2 down + 4 to go.

Sarah, your perspective and mine are not as divergent as you might imagine. I think that most if not all of Steve's non-Cpn factors would eventually improve greatly if not completely normalize on the Wheldon protocol alone by virtue of the normalization of immune function and glutathione levels achieved by conquering Cpn. If you recall from prior discussions on CPn Help.org, there is a communal wish for finding ways to make the protocols kinder and gentler. The route Steve is taking just might be a kinder and gentler way, and actually, if others could avoid the setbacks caused by viral outbreaks along the way, it might prevent them from losing faith and flaking out on the protocol. I think the 1-week course of fluconazole before starting the CAP was a smart move too. Also, those with elevated concentrations of heavy metals could enjoy the full benefits of being on a CAP more quickly if they were receiving simultaneous chelation therapy. By addressing these other issues directly while also on a CAP, the entire protocol process might move along more quickly than it would without the extras, as the overall health of the MSer wouldn't be so taxed by those other issues. Thanks again,

Cypriane~caregiver and advocate in Dallas for husband with SPMS

Hi CoB, The acetyl L-carnitine proved better for fighting fatigue than provigil. Sorry I can't recall exactly what I read or where I read it (so keep that vagueness of this hearsay in mind), but there was something I learned about provigil that scared me away...something to the effect of nerve impulses going into overdrive and nerve cells firing themselves to death. I wish I could say that an effect of amantadine on Steve's fatigue was clearly demonstrable, but I can't...too many other factors in motion. I can only tell you that since two months ago before the antivirals, antibiotics, chelation, and the sleep aid all started, the fatigue issue has greatly improved. It has a long way to go, but it's so much better. It's entirely possible that amantadine is playing a part in that improvement.

Cypriane~caregiver and advocate in Dallas for husband with SPMS

Cypriane,

I don't know what Lunesta is, but I found I got a beautiful night's sleep just by taking one or two melatonin tablets. It also is a very potent antioxidant, but the sleep is very natural and the tablets not at all addictive. I don't really need to take anything, now, though, but often still do because of its antioxidant properties.

As for fatigue, this becomes less with a restful nights sleep, but as well as the l-acetyl carnitine, 200 mg of Co Q10 and several 5000 mcg tablets of sublingual B12 will help enormously. B12 is completely non toxic so you can take as much as you want, and people with MS do need more than the average person.

As for a divergence of perspectives, maybe not, but I just know that from a starting point of not even having been initially tested for CPn, then being found to have nearly negative serum levels, My nearly total improvements have come just from doxycycline, roxithromycin and the odd pulse of metronidazole thrown in. Plus a much more limited range of supplements than people are by and large now taking. I must have been carrying ebv antibodies, nearly everyone past their teens does, plus several other viral antibodies, but I can't say they are causing me any problems. The only weaknesses I now have are a few long term deficits from CNS damage: I can't walk 20 miles any more, but I can walk enough to get by, which is probably further than most people. I will probably carry on slowly improving from this. I can paint all day, my balance is good enough to climb ladders, stand upright with my eyes closed and so on. I couldn't do any of this three years ago. I can't say that either carrying on CPn treatment full-time or adding antivirals is going to help any of this, so despite what you, David or anyone says, I still say "keep it simple" because I can't be so different from anyone else.

Sarah

I think there was a bug in the system yesterday: I posted the above, but it doesn't register on the main Antibiotics forum, so I'm trying again.

Sarah

I started anti-b's end Aug 2012 - wish I had found out about this method sooner - diagnosed rrms in 2000, now SPMS and this has really given me hope - had the ccsvi procedure 3 times now - worked to an extent on fatigue, brain fog etc but no impact at all on walking or lack of! I have had re stenosis prob with ccsvi procedures - asking myself why - cpn came up.
I am from UK, spend a lot of time in Ukraine where anti b's can be purchased OTC. I have been so encouraged by Sarah's story and the Catalyst programme and will keep all up to date here and on cpn website.
2 pulses done so far and am determind to continue!

mormiles wrote:> MS which is universally accepted as a chronic inflammatory disease.

Everyones's MS is different, but it's all inflammatory.

That is not true. One of the problems with MS that people oversimplify it. In the progressive stage many people have no inflammation, that is why steroids are not useful for most ppms and spms patients.

historically, several different treatments have enjoyed some limited success that never proved to be either lastiing or univeral in effectiveness (gluten/casein free diet, other allergy treatments, avoiding excitotoxins, chelation, antifungals, etc.)

With all these protocols the problem is that no one could repeat success. Show at least one neurologist who verified success of any of these.

As for antibiotics I do not understand why a pre clinical study e.g. with 20 people could not be completed yet. The excuses are really lame. Just document the EDSS in two years when on abx. Is that such a big deal? Believe me there are neurologists who would be happy to see results. Also, microbiologists should come out with more evidence. Do biopsy of deceased MS patients, etc. I am afraid that CPN is similar to lyme. Only a very small portion of the MS patients are infected by it.

True, MS is not a chronic inflammatory disease, so my neurologist's feeble offer of steroids as and when needed would have done my SPMS no good at all.

The excuses for not having done a test with antibiotics is by no means lame. The last test that was tried at Vanderbilt too many people dropped out for whatever reason. My view is that it is not fair to do a double blind trial when you could just be benefitting from the treatment. I couldn't have waited two years and then found that I was on the placebo arm: I wanted to get better. Doesn't everyone? Obviously not.

Sarah

Anecdote wrote: The excuses for not having done a test with antibiotics is by no means lame. The last test that was tried at Vanderbilt too many people dropped out for whatever reason. My view is that it is not fair to do a double blind trial when you could just be benefitting from the treatment. I couldn't have waited two years and then found that I was on the placebo arm: I wanted to get better. Doesn't everyone? Obviously not.

Sarah

If we want to help patients, we have to come out with research and do at least very well documented pre-clinical studies. This latter does not require double blind trials, so it can not be an excuse. There are many neurologista who would try this treatment protocol if there were some well documented studies.

Something went really wong if many people dropped out. Just think about it. Antibiotics are cheap. MS patients spend more on food suppliments, so price can not be a reason. If they got a good care from the doctors, then the risk/benefit ratio should not have been bad. Could it be that side effects were too bad or results were bad? Why is that people take much more expensive CCSVI procedures (even though it has no real benefits)?

Also, I noticed that in several forums here in tims, that people claim benefits from one treatment, but neurologists do not confirm it. It is mostly a problem with RRMS patients were many complaints are subjective and enhanced by placebo. So well documented studies would be needed.

Who do you mean when referring to "we?"

The people at Vanderbilt, including the head neurologist, Ram Sriram, want nothing more than to help patients. However, patients do not tend to want to feel worse when they start on a trial. Antibiotics tend to make you feel worse before you start to feel better. The people who don't realize this drop out. If the trial started with only twenty people or less numbers can soon drop below the required amount. You can't force anyone to do something that they don't want to.

Sarah

Anecdote wrote:Who do you mean when referring to "we?"

The people at Vanderbilt, including the head neurologist, Ram Sriram, want nothing more than to help patients. However, patients do not tend to want to feel worse when they start on a trial. Antibiotics tend to make you feel worse before you start to feel better. The people who don't realize this drop out. If the trial started with only twenty people or less numbers can soon drop below the required amount. You can't force anyone to do something that they don't want to.

Sarah

By 'we' I meant anyone who wants to and can do anything to fight this disease.

I do not know why antibiotics would make someone's MS worse. What doctors say is that antibiotics wll destroy someone's guts and cause many problems if used a long time.

So, as far as I see this is not just a matter of how someone feels like. Most of the MS patients feel worsening anyway. It is about causing additional health problems, such as IBS, Crown disease and who knows what else if the gut flora is destroyed. The problem is we know almost nothing about the bacteria which we have in our bowels. We only start to understand how important they are. Recently many chonic diseases are linked to the bacteria flora we have.

All these said, I think bacteria's link to MS is interesting. This is why the excuses for not having any proper study on it seems to me still very weak. Even here in this forum there are quite a few patients who would take part in such a study on their own cost. They would require only a medical control to make sure antibiotics do not harm them and instructions what to take and how, just like with other illnesses and a few neuro controls to assess EDSS score. Why is it so difficult? I am sure there are neurologists who would join such a trial. E.g. in Serbia, the Ministry of Health supported CCSVI procedure and it was covered for every Serbian citizen. Dr. Sclafani and other doctors answer questions in tims regarding CCSVI. Why not with abx????

I maybe should have said that antibiotics which are working tend to make someone feel worse for a few hours or the first day or two, depending on how fast their metabolism is.
If you are taking antibiotics for even a few days you need also to take probiotics: either after the treatment if just for a few days or every day, a few hours apart from the antibiotics if taken for a long period. My husband is a doctor, a consultant microbiologist who knows a good deal about the bactreria found in people’s bowels and elsewhere and is fully aware about chronic diseases and gut flora. It was him, after all, who wanted e to start this regime after reading th Vanderbilt patent. I was the one who was very doubtful until it started to work.
I said that there have been two trials at Vanderbilt but the second one closed because too many people dropped out. In my country, the UK, trials are well nigh impossible to organise for MS unless you have a neurologist involved but the current batch of neuros believe too much in the auto-immune theory: at the moment anyway. Maybe you could organise something in Serbia? Then the UK might suddenly show more interest.

Sarah

Anecdote wrote:I said that there have been two trials at Vanderbilt but the second one closed because too many people dropped out. In my country, the UK, trials are well nigh impossible to organise for MS unless you have a neurologist involved but the current batch of neuros believe too much in the auto-immune theory: at the moment anyway. Maybe you could organise something in Serbia? Then the UK might suddenly show more interest.

Sarah

Is it for real? Why is that neuros were involved in CCSVI in both Serbia and Italy? I spoke to a few neuros but none of them were blindsided. They exactly know the limits of the autoimmunity theories. There are clinics who do pre-clinical studies. That is not the expensive FDA one. I guess similar was done at Vanderbilt. Why is it such a big deal? Lots of MS patients take part in risky drug trials. They take also years. Why is the problem with abx??? Other drugs have more serious side effects. It sems not reasonable saying that patients dropped out because of side effects. If it is a problem at Vanderbilt, contact other clinics in Europe, have a network on this, do studies without FDA and put it in medical journals. Many hospitals would do it for free. Also supporting evidence is needed for CPn's role in MS, otherwise, really, how can you persuade people to do a long course of abx if they can not see any sign of improvements for years?

I maybe should have said that antibiotics which are working tend to make someone feel worse for a few hours or the first day or two, depending on how fast their metabolism is.

I think many of us took abx in our life. I can not remember any side effect in the first day or two, but the abx was useful. None of my doctor said such thing before. ...Even if it happens with some, it can not be a reason to drop out.

My husband is a doctor, a consultant microbiologist who knows a good deal about the bactreria found in people’s bowels and elsewhere and is fully aware about chronic diseases and gut flora. It was him, after all, who wanted e to start this regime after reading th Vanderbilt patent. I was the one who was very doubtful until it started to work.

I fully agree. The benefits outweigh the risk. However, gut flora could be a problem with some or many. None of the probiotics are considered drugs, so they get no such control. Consequently, as most food supplements these might not contain any useful material. Also, the bacterias of the bowels are not well known. Who knows exactly what is destroyed and what is rebuilt.

Anonymoose wrote:I am following the Wheldon protocol and have found that mcp helps immensely with the resulting inflammation. I've done a little research on mcp and suspect that it's ability to bind to inflammation causing galectin-3 (present in elevated levels in ms and arteriosclerosis plaques) is what makes it so helpful to me. It also acts as a gentle chelator. It might be of use to pwms even if they aren't on an antibiotic protocol so I thought I'd share.

How much does this help?

What is the suggestion by Vanderbilt or Wheldon for avoiding inflammations and infections promoted by antibiotics? Both can occur when abx depletes one's immune system after a few months use of it. I really doubt that the available probiotics can take care of all these problems. Inflammation is a very bad thing for MS patients and it causes real deterioration in MS, not just some bad days.

I am new here, even though I have been reading this forum for a while. I find the concept of bacteria infection causing MS very interesting.

Is there any doctor who can advise me if I go on the abx protocol? Does the doctor adjust the protocol to the specific person based on his reactions to the drug? Any personal experiences with the protocol?

Any side effects experienced? I read some in this forum on infections, inflammations and bowel problems. These made me think and I also googled on these abx. The leaflet of doxycyclin says for example that it can be taken max 3 months for dermathological problems (this was the longest period mentioned). So, I would assume that taking them for over a year would require regular medical check-ups. What do you do if any of these signs occur? How can you decide if it is from abx or not? I saw Liberation facing these problems. Could you find a solution?

Any supporting study (the ones I read on CPn Help.org do not seem convincing)? I am interested in starting this protocol; however, I am cautious as CCSVI became just a hype. I hope abx is different.