MS/infection

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Postby mrhodes40 » Sun Oct 01, 2006 10:11 pm

Mea culpa Cur-o I am sorry. Please forgive me. I was thinking of earlier studies on t cell vaccination such as this reference <shortened url> and misattributed the numbers to tovaxin.
were immunized with irradiated autologous MBP-reactive T cells and monitored for changes in rate of relapse, expanded disability scale score (EDSS) and MRI lesion activity over a period of 24 months. Depletion of MBP-reactive T cells correlated with a reduction (40%) in rate of relapse in RR-MS patients as compared with the pre-treatment rate in the same cohort. However, the reduction in EDSS was minimal in RR-MS patients while the EDSS was slightly increased in SP-MS patients over a period of 24 months


Tovaxin is reporting ( to the financial press anyway) much better results but this is the same scientist and the same process, it's just that instead of being at a University he is now part of a for profit company and they are now a trivalent rather than monovalent vaccine (it targets more than one peptide).

But that having been said it was incorrect of me to attribute tovaxin with only a half success as there are no peer reviewed numbers yet and lay articles such as the one in the previous post should not be used for such things. It might be more successful than the previous vaccine by a long shot. We can hope! My point was nothing helps everyone and I think that is inarguable...
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Postby mrhodes40 » Sun Oct 01, 2006 11:50 pm

Thanks NHE for the link. Perfect, I had read similar things and combined with my little reading on t-cell vaccination it seemed we were in the same ballpark with tovaxin. We can hope it's way different than the old numbers though, maybe it is! It is trivalent not monovalent. What a great community! :D

Lyon, I agree that this is a great community for sharing and debate, and I am thankful for Ian's great contributions and inquisitive mind. We all learn from investigative thought. :wink:

It is my goal to be clear and fair about this material. I actually agree with Ian about some of his assertions, such as that this is investigational and people ought to know that, but where we part ways is that he seems to dismiss anecdotal evidence of improvement as lies and the theory behind it as already proven impossible, and that simply is not the case. this paper belies the latter and as to the earlier, these people are really better. I have personal evidence of Sarah's improved handwriting recieved in the course of correspondance, and Mackintosh has seen Ice and Katman and attests that they walk just fine, though Katman, who could not walk without an assitive device, remains at this writing with a limp now, though not needing assitive devices at all.

And say Minai, I need to be clear I walked all over our new lot with no cane and both ways down a path to the beach which was 1/8 mile with no cane, but the 1/3 mile walks are assited with walking poles. I am better but not miraculously so. My gains are similar to what you read about in Tims tovaxin reports; improved but not totally well by any means. to be honest, Tim's report and my experience are similar to what you'd expect in someone who had polio-they do not usually get completely back to "normal" and always have some deficits that show up especially if they are tired or otherwise stressed. This is what I'd expect in even effective MS treatments unless we are talking about someone still remitting completely between attacks. That would not be me. :cry:
I think tihs paper is a step in the right direction. We need more serious scientists saying hey the status quo is not working.
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Postby yguner » Mon Oct 02, 2006 1:42 am

Thanks Marie ,thıs ıs a good paper for sure. I also get ımprovements but very slowly and ı thınk we can expect more ımprovements when our bodıes completely cleared from cpn bacteria, because ı stıll have bacteria ın my spınal cord and some parts of my head(ears/eyes) ı feel ıt . Guner
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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Postby bromley » Mon Oct 02, 2006 3:33 am

Marie,

I actually agree with Ian about some of his assertions, such as that this is investigational and people ought to know that, but where we part ways is that he seems to dismiss anecdotal evidence of improvement as lies and the theory behind it as already proven impossible, and that simply is not the case
.

I have questioned the EDSS improvements reported by Anecdote and Katman - improvements from 7 to 2. I have questioned whether these EDSS assessments were undertaken by a qualified person e.g. a neurologist. It also surprises me that both Anecdote and Katman have fallen out with their neurologists.

I think it is only right to highlight these concerns as some using the site for the first time may be under the impression that starting abx will deliver the same results.

Anecdote wrote:

Do you want to know why Stratton, Sriram and David refer to "A small subset"? It is because of a need to actually get into print in the first place. David did a small study of local people he treated who he saw regularly:

Seven out of ten people responded to treatment, two out of ten were doubtful as to whether they even took the antibiotics. That is quite a large subset to my mind. It was about eighteen months ago.


The first quote strikes me as bad science - or at least not having the courage of your convictions. If the authors think that Cpn is the cause in all cases of MS - then say it.

The second quote is odd. Basically, if people don't respond to a treatment say that the people didn't follow the protocol. Would Biogen get away with this to explain why some had seen no benefit on a treatment trial?

I think it is only right to challenge - I would expect the same if my wife had developed a treatment for this disease and I had seen dramatic improvements and was encouraging others to follow the same regime.

I find it strange that those who do not report dramatic results are labelled as 'having a bad day'. I didn't write that I had been on abx for 1.5 years and the regime had not improved my walking. Yet I am accused of taking the quote out of context! We need to be honest about the effectiveness of treatments - that means reporting good results and bad results. To badge those in the latter as 'having a bad day' or not following the regime does the abx theory no credit.

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Postby Anecdote » Mon Oct 02, 2006 4:29 am

Bromley, if the first quote strikes you as bad science, remember that you are not a scientist. Science is much maligned these days and people who have something to say often have to tread carefully. Stratton was actually invited by the editor of this journal to write the paper. He chose David to do it with him.

I don't see it at all odd to say that if someone doesn't respond to treatment it is because they haven't been taking the medicine if they say, when asked if a new prescription is required they say "No, not yet, I found the rest of the last lot down the back of the sofa" when the prescription was for two months and this was four months on.

EDSS scores were developed to be easily used by a local GP, you don't need a neurologist to do them. It should be obvious if at first I couldn't hardly use my right arm at all, but now I can paint large canvases, lift them on and off the easel, hang them on the wall, walk up and down the stairs of a three storey house with a cellar all day without falling down them and so on and so forth, I have improved somewhat. Marie has commented upon my writing, everyone I speak to has commented upon my speech at some time. Yet my neurologist even refused to look at my new scans. Is that good science?

Rica, also a physician's wife, can talk for herself, but I won't have Alex's comment taken out of context and I won't talk about it here. You are being totally pout of order by even picking it out in the first place and you should be ashamed of yourself. Go back and read her regimens entry properly and you will know why she talked like she did.

Sarah
Last edited by Anecdote on Mon Oct 02, 2006 7:56 am, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Context

Postby gibbledygook » Mon Oct 02, 2006 5:30 am

I think my quote about no improved walking after 1.5 years of antibiotics was followed by a gripe that I hadn't taken the antibiotics earlier. As I see it my progression/relapses halted shortly after taking antibiotics. I have had no adverse events since starting antibiotics where I had been progressing/having relapses every few weeks. Certain neurological symptoms including burning pain and night spasms have improved but my walking and bladder have clearly not since with my swollen belly or with unnatural hormone levels my walking has reverted to its worst of last year. This is very probably because I have lesions in the spinal cord which, although they don't seem to be getting worse are very unlikely to improve. Thus my walking is extremely unlikely ever to improve with antibiotics alone. After all they are just meant to kill an infection not grow new myelin. People with less spinal cord involvement may improve a great deal more as the brain is far more plastic than the spinal cord.
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Postby Anecdote » Mon Oct 02, 2006 8:09 am

Yes, Alex, and that is why I improved so much comparatively quickly. I had very little spinal involvement. The deficits I now have are all in my legs. They are improving, but slowly. I would far rather have full use of my brain, eyes and hands than not have these but be able to run marathons. Other people might think differently.

I hope you are starting to feel better today. :)

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Anecdote » Mon Oct 02, 2006 8:30 am

Lynda said on the previous page:

Though bone health is the only approved area of use for Vitamin D at this time, the suspicion of involvement in these other areas may give us more reasons to add D. I'm glad to hear that you are taking it. Here's to D!!! Drink up!!! (Shouldn't that be: "Swallow down!!!"?)


I do, and I aim to be the only person with MS who ends her life at a great age having never broken a bone and without needing to wear glasses. :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Mon Oct 02, 2006 10:49 am

Bromley, nurses are qualified to assign and EDSS number. your MS nurse can do this no problem (I assume UK nurses are like US nurses here). It is incorrect to say that Dr Wheldon cannot assign Sarah an EDSS number or imply there is special qualification to do it. The edss was specifically designed to be easy to use-And there are some serious flaws in it due to it's lack of sophistication. One that we are running into here is that people who theoretically recover from MS have no data set to evaluate how a person is doing compared to other recovered persons, and EDSS numbers may not apply in the same way.

I offer the polio analogy as a good model for what is likely to happen to people are "recovering" from MS. People who had polio had things happen like their legs getting completely paralyzed from the attack of the virus. Some people recovered completely as if they never had polio in the first place esp if very young, others live the rest of their lives
with "weakness" in that limb. When tired stressed ill or otherwise pressed these folks have their symptoms flare up, the leg is weaker and stumbly where otherwise they function well and are seemingly normal.

The polio did not come back obviously. It's just that recovered nerve areas are very fragile and not 100%. Since the EDSS is primarily an ambulation scale to assign an EDSS number we could assign a post polio person an edss number, but do they get the number from their day they had the flu or from their regular day?

Obviously you'd go with how they normally function, not the sick day. Yet a person who never had polio at all is functional every day and always qualifies as an edss 0 no matter how sick or tired.

The MS patient progressing through the EDSS Scale (Bless us all) is literally quantifying damage in new areas as they go up in numbers. The person newly diagnosed whose EDSS is a 2 at the first neuro visit is going to be different than the person who had a bad attack and got to a 5, then recovered back to a 2. How could they be the same? One had larger nerve areas impacted and has areas of old lesions that are inactive and are visible as shadow plaques on MRI....and the one who was a 5 at one point will be vulnerable to later attacks in the same brain area AND might also experience pseudo relapses during a fever or very hot weather for example in those old areas where the two who was never any worse than that has completely normal brain tissue in those other areas.

One of the reasons your neuro wants to talk to you if you are having an exacerbation is to decide if the "new " symptom you are experienceing is actually and truly "new", or if it is a flare up of an old symptom related to some other factor. If it is completely new it certainly represents a exacerbation, otherwise it could be an infection or something making the old damaged areas less functional. You will get steroids in the first situation and further evaluation to find the cause and probably no steroid in the second.

Alex is experiencing a pseudo relapse based on the agressive treatments she is undergoing. She is sad because she is faced with those old symptoms again and realizes the nerves did not recover as completely as she had hoped and as well as they function on her other days. But abx are not neuroregenerative so that is expected.

Sarah absolutely can write a beautiful hand and obviously can paint, where I know for sure her handwriting was awful before because I have seen it. I also own a number of her prints, and some are recent works. But if she got onto a hot springs for an hour you can bet she could not get out and do those things with the same ease.

One of your complaints seems to be that these folks cannot have recovered if they are not completely back to normal, in other words, in your mind Sarah cannot be an EDSS 2 if after a long walk of several kilometers she is using walking poles, but I say that is exactly what we would expect. You'd see the same in a post polio person, or even a person who had a mild stroke. Their endurance is less than a person who never had the disease to begin with and they can revert somewhat when the repaired nerves are tired. The EDSS has no way to quantify that.

In my mind the fact that there are some residual issues after fatigue or illness actually lends credence to the whole thing because it is obvious we are talking here about a person who had substantial deficits at one poiont, not just RRMS. SPMS does not stop and reverse itself, that's why it's not RRMS. Yet I have personal evidence in the form of handwriting of Sarah's hand recovery. I have never seen her walk but she has said she walks a couple of km with walking poles and at the end is tired and more off her gait vs the beginning. Just what we'd expect of a person whose MS was arrested and in whom the body repaired as best it could.

I find these people credible and believe they are reporting exactly what they say they are, recovery from MS due to antibiotics. The publication of this paper reinforces that it is a plausible theory, and the stories of the few people who've been doing it reinforce the idea it may work well for some people.

ANd honestly, if I personally get better I really don't care if it helps 100% of people or 20%. If it helped me it helped 100% of me. I'd be glad I tried it
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Postby mrhodes40 » Mon Oct 02, 2006 10:49 am

:oops: FOr crying out loud how did I manage to get two? sorrry for the clutter marie
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Postby bromley » Mon Oct 02, 2006 1:40 pm

Marie,

All good points which I fully recognise.

Thanks

Ian
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Postby Lyon » Mon Oct 02, 2006 2:27 pm

oo
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Postby mrhodes40 » Mon Oct 02, 2006 6:35 pm

Thanks to everyone for participating! :P It is exciting to the folks using abx to have the approach validated in this way. Now whether it means a watershed of new thinking in the neurological community or not is another matter entirely..........
:? marie
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Postby Lyon » Mon Oct 02, 2006 7:01 pm

oo
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Postby mrhodes40 » Mon Oct 02, 2006 9:31 pm

Some do have ability to have therapeutic impact across the BBB or we'd not be able to cure things like neuroborreliosis and neurosyphilis. If a doctor is taking care of someone with a particularly serious infection like a brain infection you consult a specialist microbiologist MD to help you get the right drugs for that. That's what the specialty is all about. The doctors who authored the paper this thread is about are both microbiology MDs so the ins and outs of which drugs cross which ones can be taken long term, which ones work on which germs, which not etc etc are their bailiwick. Also physically speaking, once an infection is in the CNS the microglia can alert the peripheral immune system and "invite" t cells etc in to help out effectively opening the BBB. One probelm, of course, in MS is that open BBB. Is it possibly open because there is an infection in there and the microglia opened it up to t cells etc? marie
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