Personal Data collection

[mrhodes40]

This is a call to all abx users to begin to collect data. This will give more objective feedback as to how people are doing on the regimen and will provide the incentive to fund more trials.

I have kept personal data on my own ability to perform activity at the gym on the crossrobics or the elipse for several years. I did this because I read that ALCAR (acetyl l-carnitine) could help stroke victims function better by about 30% (study not online anymore). I wanted to know if it would work for MS by improving neurotransmission in some way so I worked out at they gym for a month noting how far how long then took the ALCAR and checked the difference. The difference was astonishing. I could work out 30% longer and could still walk somewhat after I did it, though I suffered and afternoon "crash"(reduction of function), which turned out to be related to oxidative damage which needs to be countered by taking glutathione or coQ along with it. I wrote a paper on it with literature research for an MS clinic.

In an unrealted item I posted some research on boston cure, and an MS gal (who had worked in medical research like I did) and who has since become my e-pal, was also doing this kind of empirical study of her own and she contacted me and we began to share data. She had discovered the same kind of treatment affect for coQ 10 which also improves neuroconduction. We have also collaborated to find that glutathione is useful, that phosphatidylserine helps especially with thinking in me, that histamine results in increased energy and function etc. We co authored a paper on boston cure that outlined how we had kept data and asked other s to contact us if they were doing this as well.

I notice the Wheldon regimen uses carnitine and coQ, both of which improve function by our data. One might speculate about how it does that ;I am not sure. Perhaps the antioxidant factor in the case of coQ is at issue. Oxidative damage plays a big role in MS no matter what that actual causitive agent is, whether CPn or Lyme or EBV or even the old (I do not believe it) autoimmune model. Certainly during treatment you want o protect the nervous tissue as all this immune activity takes place to clean up the CPn.

For this model here is what people might like to do;

Choose an exercise that is measurable in some way and which you can do regularly. If it's a walk to your post office or something that would work. I will stay with my elipse and crossrobics at the setting of 3 at the gym I go to. Take a baseline of how far you can go by doing your best for a couple of weeks and average the findings. Pushing my limit, I can go for 30 minutes on either machine. After wards, I cannot lift my right leg Keep a log of how you do. As you move through the abx regimen, you will be able to measure improvements. I suggest a regular time for checking your results. For example before each flagyl pulse, which would give a monthly reading, go ahead and make a regimens entry on this which should be your best day.

As we get two years out from now we should have a lot of people with little or no change for months, then a conversion to real advancement about the time they notice the herx reducing. I ask you, would you not take notice if there were 50 people making such entries?

If you start taking the supplements ahead of the abx, you will be able to allow for the functional improvement that they will engender. In other words, if you've not started yet with abx, take the supplements and see how you do at the gym for a while on them.

If you are already doing abx and supplements, then just start now and keep track. When you make a note in your regimens log so people can see how you are getting on be sure to note your objective data about how you are doing and people with inquiring minds can see some measurable changes. This kind of data while not truly scientific can provide some real feedback about how people are getting along with the regimen.

Bromley made a good inquiry and asked a fair question. this will give us the data to share with people. Of course, you can also use MRI's and your neurologists assessment of your edss score for extra data when you get this kind of feedback, but the exercise log is a way for each of us to be part of something bigger than ourselves. People like Bromley, and me for that matter as I've not begun the abx yet, can question the improvements. As you read page after page of people's regimen diary, you see better days and worse days. Overall there is a confusing trend towards I think I'm better. This would give people some real concrete stuff. The neuro community would have to take notice.
RECOGNIZING THAT SARAH DID NOT KNOW SHE WAS BETTER FOR AT LEAST A YEAR AND THAT THE DATA WILL SHOW MINOR OR LITTLE IMPROVEMENT UNTIL THE HERX'S START TO GO AWAY no one should feel that they are not doing well because they are not going much farther at 6 months or something. LDNers.org has been taking polls and such for the same reason, to move the MS community at large in the direction of finding LDN worth a trial.

If you are objecting at all, it's probably becasue you are thinking people won't get better for a good bit of time and we don't want people realizing they are not better yet and bailing too soon, but think about this. Every medicine there is must provide data. We can be part of our own study and findings. If nothing else you will personally have some data about how you are doing which is concrete and measurable. Sarah clearly has concrete data. It was that doctor's astonishment at her MRI that really sold her on the whole thing and heartened her up to go on and finish it. Now she's aedss2 when she was almost 8. I'm suggesting we make a data bank that will do the same for everyone.

Aimspro does not get to go around saying they are doing great things for people without backing it up with science. VU's been working towards irrefutable evidence of this approach, but we can add to the anecdotal pile in a more menaingful way here. We are being treated with flaygl and for longer. This could be important!

By the way Aimspro is a polyclonal antibody. They vaccinate goats against a bunch of things as yet undisclosed ( I assume here that these things are germs and not our brain or immune system cells), and the goats produce antibodies. You get an infusion of antibodies from Aimspro. Monoclonal antibodies are targeted against a specific part of your immune system to reduce your "inappropriate" reaction to your brain, like tysabri which blocks adhesion molecules. Polyclonals, assuming the vaccinations are germs and viruses, is like getting a dose of someone elses gamma globulin. you have immunity to whatever they were immune to. I see no reason why we would not have compatible function with abx and aimspro assuming they are vaccinating the goats against things like ebv and CPn and Lyme and that kind of thing, though the trade secret (what the vaccinations are)is not known now. I darn well hope that is how the thing works.

I hope people are on board with this idea. Just imagine a data bank of 50 people who do the abx all of them with regular EDSS and neuro feedback and that monthly preflagyl pulse readout of distance or time on a machine to back up the idea of doing better.

Does anyone think a special thread for "data" ought to be started? I see it as almost a Marie's data file and a Daunted's data file, and Eachones' data file etc. IT would have limited stuff in it, like the first entry listing the measurable thing whatever it is, the current distance or whatever, a brief note about how you feel after and anything your doctor may have told you that is measurable that week along with how long you've been on the regimen and where you are at in it ie "I started doxy/rif/amox on 8/20/05. First flagyl pulse this month. After flagyl was able to go only 10 minutes on the elipse then leg was exhausted. Today, 20 days after flagyl pulse I went for 40 minutes and was still able to walk after wards without difficulty. Next pule tomorrow."

I would appreciate a bit of a debate about how to format and structure the data entries so we get something really good.
Blessings to all!
Marie

[SarahLonglands]

Correction:

RECOGNIZING THAT SARAH DID NOT KNOW SHE WAS BETTER FOR AT LEAST A YEAR AND THAT THE DATA WILL.....................

Sarah did not have the courage to believe that she was getting better until six months and the seeing the evidence by MRI scan.

I suppose I should say that such a thread is probably a good idea, though, as long as the files were kept just for info: not for people asking questions, and as long as my entry would take account of the fact that I am a dreadful record keeper and have no intention to change that habit. I also have a lot of work to do over the coming year, putting together an exhibition, so won't have much time.

Sarah

[mrhodes40]

HI Thanks! Does everyone who has been on it for 6 months KNOW they are better by then? I must have been mistaken I thought somwhere I read that one needs wait a year to get past the herx and know for sure you are on the improvemd list..
Sarah, you're off the hook. David already has yours on the progess report of his site. I'm thinking more of the other people who are in the midst. If you wanted to do it, I would certainly enjoy seeing your upward progress all laid out for all, but I was really htinking of the new people as they go through the approach.
An entry would go like this :

August 16. Started doxy/zith/amox today.

Exercise: elipse or crossrobics
level: 3
time: 30 minutes
functionality afterwards: can't life right leg more than 1 inch. Walk diff.

Dr visit Edss 4.5 MRI 4 lesions, 1 is 5 cm in frontal area
____________________________________

Sept 16
Doxy/zith/amox
exercise elipse
level:3
Time: 38 minutes
functionality afterwards: can't lift right leg more than 2 inches
__________________________________
Oct 20
Doxy/zith/amox FIrst pulse of flagyl oct 6
exercise:elipse
level:3
time :12 minutes
functionality afterwards: Can't lift right leg 1 inch
________________________________________
November 18
doxy/zith/amox flagyl oct 6th
exercise elipse
level 3
time 46 minutes
functioality afterwards: can walk can lift right leg 4 inches

This is not complex or hard It would be valuable though. See what I mean? The flagyl pulse shows a drop in function followed by an improvement. What if 50 people recorded such things?
What a resource.
BLessings
Marie

[ljm]

I have been measuring two things, but have shown zero improvement in either. One is that just past halfway on a 5K run I start seeing double. That hasn't stopped, nor has there been any extension of how far before the double vision occurs. I've been on ABX for four months. I agree its worthwhile to keep track of these things, although a bit dismal when there is no change.

[SarahLonglands]

Lizz,

Don't be down, because four months is nothing, especially when you weren't that bad to start off with! The people who are most likely to see immediate changes are people like me, who quite suddenly found that she couldn't walk down the rather short front garden path. Even though I improved from that within a few weeks, I wouldn't have been confident enough to post anything until at least six months, and I was still using a trekking pole to go any distance. Just remember the results of your MRI scan.

I still can't run further than the nearest post box (about 150 meters) even now.

Sarah

[SarahLonglands]

Two postings copied from the General Interest section, "Antibiotics - had your fill of them?"

from Justinian:

I'm posting here rather than in the ABX forum 'cause I think its probably more appropriate.

The kind of stuff that bothers me is, as in the "Personal Data Collection" thread, ljm posted that she has been taking abx for more than 4 months and not seen improvement. The response to her was "don't be down because 4 months is nothing."

Antibiotics aren't candy. They're poison. They're just poison that kills the bacteria faster and at lower doses than they kill you. Four months on antibiotics is not nothing no matter how much we all want abx to be the answer. I think this is the critical issue... if people aren't seeing results we have to recognize that they aren't seeing results. You can always say "keep it going longer, keep it going longer" but at some point you have to look at things objectively and say "it's not working."

Maybe that's at 6 months or 8 months or whatever and not 4 months. But part of the cheerleading atmosphere I (and I think bromley) reacted to is exactly that sort of thing. FOUR MONTHS on antibiotics is, really, quite a long time to be taking them without seeing results!

from me:

The kind of stuff that bothers me is, as in the "Personal Data Collection" thread, ljm posted that she has been taking abx for more than 4 months and not seen improvement. The response to her was "don't be down because 4 months is nothing."

Justinian, under most circumstances I would agree: if you were taking the stuff for a sore throat and you still had that sore throat four months later, I would say there must be something else wrong. However, if you were taking abx for tuberculosis, if you stopped the treatment before six months, you would not be cured. Now, chronic CPn infection is a different matter: because of the insidious nature of the pathogen and its complex life-cycle, you have to take the right abx, in the right order, for at least a year to be sure of being rid of it.

Lizz was talking about her improvements fitness wise: you don't take abx in order to become a champion marathon runner. She is comparatively early in the disease an the MRI she had coincidentally a couple of months after starting treatment showed no active lesions. This might have been because she had only had a single demyelinating event which would never have gone on to full blown MS or the abx had a hand in stopping disease activity. She chose not to wait until the disease became far worse before starting treatment. Her choice and I think the right one.

What I do feel a little uneasy about is people making regular, from the word 'go' updates. I have told Marie this, but again it their choice, and people must realise when viewing these updates, there are going to be some good periods and some bad. I can see the use in it, though. I couldn't have done it because I needed the follow up MRI as solid evidence: I deep down inside knew that I was getting better because when I started my right arm was completely useless and various other things, but only a couple of weeks before the scan, I was suffering the west pains across my shoulders and down that arm that I had ever experienced. I might have thought I was having a relapse except that I was assured that these weren't CNS pains, by someone who should know about these things.

Finally, with regards to antibiotics being poison, you tell me something, apart from purely dietary measures, that isn't.

Sarah

[mrhodes40]

Gosh I agree. I did not ask for people to make measurable posts so they could decide it is not working at 4 months. You must understand that this is too soon for the antibiotics to be showing much based on the lifecycle of CPn and the VU work. This is a long term treatment. You don't decide to do this based only on forum posts. And you don;t stay with it when you feel punky only because of cheerleading, though you might need that encouragement because it is sometimes difficult. Read the CPn work that Daunted so aptly put together.

Also, obviously just because you have a symptom that does not go away does not mean it's not working. Any permanent damage is going to remain...it's permanent. No one claims that every symptom will disappear. Antibiotics aren't stem cells! It is possible that even a person with early disease has some nerves that have a permanent scar. In no way does it mean that Lizz is doing something foolish if she is choosing to stay with this. She has no active lesions. That's how the pharmaceutical makers judge their products in trials after all. They do not say "Oh darn! She still gets double vision. I guess this doesn't work..." IF the lesions are better they submit to the FDA based on that.
Many are taking traditional meds based on this kind of result.

No lesions is an extremely important bit of data. Is it meaningful science since she is only one person? No because maybe she would have no active lesions anyway today. We can't be sure. You'd need 50 people saying they went and had their MRI and none of them had active lesions to start to say that. We might have that with time here. I for one will post such things as MRI and lab results

The drugs offered by traditional medicine for MS are not benign, besides often being immunosuppressive. Since it is clear by the VU work that at least SOME people with "MS" actually have a bacteria, ( I am an especially good candidate for this because I have seronegative arthritis also and I have more than 11 tender poitns-a sign of FMS) I do not personally want to suppress my immune system without being sure I tried this for a good long trial first. My situation is such that what is offered to me is novantrone. I will NOT go there without doing this first. Will NOT. That drug is NOT benign, so much so that any concern about abx is completely inconsequential compared. This is a personal choice based on my belief that MS is probably not autoimmune (Prineas and Barnett) and that the VU work is compelling, and my persoanl medical situation

My request had more to do with people who know they are better. How did they know? Some have answered: Lifeontheice ( a doc)can jog 2 miles. Sarah (wife of a doc)can ride a bike about 4 miles and a scooter. Jim (a PhD with research background)can play golf and still move at the end of a full 18 round, his CRP is down and his lymph up though his issue is not MS. Kataman (wife of a doc) can take stairs many times in a day and feels secure on jury duty. These are important gains that people can understand: every one of them long past the 4 month mark, and every one of these people was progressive and/or had the disease a long time. How many people do you know who are progressive turn around and go the other way? It does not happen in the natural history of MS. There are none. Sarah, and the Vanderbilt University patents and research documented cases of that happening.

If you do not believe the VU research or do not believe that the approach has merit but it is just a whim to try for a few weeks and see, do not do this. You have to understand and believe the VU research and the work on David Wheldon's site to go along with it. IF that's not you, then let those of us who have decided that the approach has enough merit to be worth our time do it and share our experiences. The list of functional gainers above is not lightweight in terms of medical science. They all, and I also, have been able to understand it well enough, and are convinced enough, to feel committed. None of the people above are fooled by any cheerleading into doing this. I'm a nurse. I am also choosing based on conviction that the research is compelling.

Blessings
Marie

[Daunted]

A couple of things.

I am undiagnosed with a vague neurological condition, positive VEPs and CFS/Fibromyalgia-type features, followed closely by a MS specialist as someone with a 'clinically isolated syndrome with unremitting symptoms'.

Last March (2004) I was struggling with walking up my stairs and the prospect of navigating a mall made me tearful.

My symptoms remained fairly steady, perhaps getting a bit worse, through all of 2004. My neurologist was particularly concerned because there was no recovery apparent.

I started antibiotics in December of 2004.

Last week I played 5-on-5 basketball in the summer heat for an hour, and although I'm not Michael Jordan by any means, I kept up.

I will never forget that when Dr. Powell examined me, he said, "Your legs are pretty shaky." 8 months later, I am running full-court and shooting 3-pointers.

This is very messy evidence, because at the same time, I have had several episodes of other types of symptoms, usually seemingly provoked by Flagyl. I'm also a subjective and imperfect observer as I have a great deal of hope for the antibiotic treatment. I also have been found to have mild cervical spondylosis which is thought to be non-contributory but who knows for sure, but in the interests of full disclosure I mention it here. It's also possible I have an unknown waxing-and-waning condition yet to be discovered but I doubt it, I have been to 10+ doctors in the past 2 years and four neurologists.

I have chosen to take the antibiotics, under the supervision of a rheumatologist who feels they are completely appropriate and has diagnosed me with a seronegative CPn infection. I won't post my whole medical history here but will just say that it is very clinically suspicious for CPn, including an unremitting unproductive cough for months preceding the episode and long-standing chronic sinusitis.

I recently had a negative MRI but will never know what the "natural course" of my syndrome would be had I not intervened with antibiotics almost IMMEDIATELY (relatively speaking), which is hardly ever done. There are innumerable people on MS forums, for instance, with signature lines that read like this:

"CFS 1999, Fibromyalgia 2002, RRMS 2004."

I believe there is a reason for this common pattern and felt it was possible the antibiotics would help me avoid "joining the club". I realize my symptoms are quite mild compared to most people who log on this board, but that is exactly why I post, because I feel that people in limbo may want to consider this as an option. I think there is little doubt that if CPn is the culprit, the earlier we intervene, the better.

Marie your comments in particular are well-taken. This should not be undertaken lightly and there is no guarantee of success; the material that led me to use this regimen is surely not contained to this board, but consists of a great deal of additional research (but the basic points may be found on this forum). That the questions were answered to my satisfaction does not mean they will be for others, certainly.

P.S. I am a doctoral student and I'm pretty familiar with medical research. This treatment cannot be said to have met rigorous standards of scientific proof at this point. I agree with that. However I see that as pretty obvious and think it is useful for us to exchange our stories here.

Bottom line, I have great respect for the scientific objections but am pleased with the decisions I have made with the ambigious scientific evidence available. If it turns out the antibiotics are unrelated to my improvement, a possibility I do consider, I will still be happy with the decisions I have made.

I am very glad this board contains this information. LDN has experienced a patient-driven movement which has now led to more research at the professional level. I am hopeful that the same may happen with anti-CPn regimens for MS.

[mrhodes40]

Great post. Thank you for the information Daunted! Wow! Playing basketball in the heat and being able to run is a real accomplishement for someone who had unremitting symptoms including difficulty walking up stairs

Also you said::
I have chosen to take the antibiotics, under the supervision of a rheumatologist who feels they are completely appropriate and has diagnosed me with a seronegative CPn infection::

I am also being followed by a physician who feels abx are completely appropriate. This is an important point. She usually uses the marshall protocol which was develpoed by Trevor Marshall for his sarcoidosis. He is healed. This story has important similarities to ours. She asked me to study it and we will talk about the similarities to the WHeldon plan and how we will proceed next visit. I will share more about the sarcoidosis story in a separate thread.
BLessings
Marie

[Daunted]

If I had sarcoidosis I might consider investigating the Marshall protocol further but for CPn I cannot imagine that it would be effective.

Just a point of clarification: When I say, "struggling with climbing stairs", I mean I would get out of breath, or my legs would be wobbly, or it would feel like it was quite an effort to get up them- but I could always get up them.

When I say I can now play basketball, I don't mean that I can do this without symptoms- my legs shake and tremor during and after the game, and I find my knees buckling from time to time, if only for a moment or two.

I don't want to exaggerate in any way so this is just clarification.