Second anniversary since starting treatment

A forum for the discussion of antibiotics as a potential therapy for MS

Second anniversary since starting treatment

Postby SarahLonglands » Wed Aug 10, 2005 7:08 am

Copied from the Regimens section, because I don't want the bit about pseudo relapses versus real relapses to go unmissed.

Either Monday or yesterday was exactly two years since starting the antibiotic treatment. These last two years have been very strange ones, to say the least. Not being someone generally inclined to post on forums or either look at them come to that, six months into the treatment, with an amazingly improved MRI scan (for someone with SPMS) under my belt, I thought that I ought to do something to spread the word about something which had given me such improvements against all odds, because having looked into things in the previous few months, I knew what difficulties the originators of the research in this field, namely Ram Sriram and Charles Stratton of Vanderbilt University, Tennessee, were having being taken seriously. Well, I chose the wrong site to start with, being a novice in such matters, but eventually found ThisisMS in June of last year.

Now, I know many people who are taking antibiotic treatment, based on the theory that MS actually has an infective cause and that CPn is the culprit. Not by any means all of these post anywhere, which is their choice. I also know a few who started out but then got disheartened because it isn't the quick fix they had hoped, and so have stopped and gone on to something else. Again, this is their choice. They always have the choice to revert to antibiotics at some point.

What I would like to reiterate here, though, is the fact that antibiotic treatment is not a quick fix because CPn is so difficult to completely expunge from your system, and this very expunging can lead to some very uncomfortable episodes en route. For instance, I can now say that I have had no relapse or progression of the disease since starting treatment, whereas before this, once I had become truly SPMS, I was progressing at an alarming rate. This does not happen to everyone because I know of people who are a fair bit older than me yet are not at the moment so badly affected as I was. This partly depends, amongst other things, on where in the CNS the disease strikes and how recently one has had a reinfection with the organism.

David is very shortly going to be adding a piece to his web-pages, explaining the difference between a true relapse and a pseudo relapse, discussed with people who should know, which many people have probably experienced on the CPn regime, so I will leave it to him, then cut and paste it when he has done it. It occurred to me thinking back, that if I had not been married to David, who could go through such things as and when they happened, when I experienced the awful pain in my shoulders and down my right arm, at just short of six months, which made my right arm temporarily useless again for maybe a couple of weeks, I might have put this down to a relapse. It can't have been because apart from anything else, no disease activity showed up on the two subsequent scans.

So now I can get on with doing new work for an exhibition in France in something over a year's time, violin dealing and running my small company without the fear that I am not going to be able to carry on. I can even race around the park on my bike: I can't manage running yet!

Sarah :)

As a change from a picture, here is a poem written by David and published in 1998


A constant dream of those
who can no longer walk



A constant dream
of those who can no longer walk
is the running over level sands.
In the close and confined air
the dream recurs—
the running over level sands,
no hunger for the air
which comes like nature to the breath,
no flight upon a freedom
for the spirit freely is,
no sight taken for a course
for all that being takes unto itself
is a running over level sands.



From 'The Present Perennial' ~ Sept. 1998 ~ © David Wheldon
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 LifeontheIce » Wed Aug 10, 2005 4:38 pm

Do I have to copy my response too?
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Postby mrhodes40 » Wed Aug 10, 2005 4:47 pm

Sarah,
Thank you for taking time to post. thank you for sharing your story. I honestly would have only gone along with the new doc I am seeing, her approach being minocycline alone, if it had not been for your story and your husband's website detailing his regimen. I can clearly see that the CPn lifecycle would never be truly eradicted with minocycline alone, though some slowing might be seen. Only through your generous donation of time and the telling of your story could I have known of this. Thank you from the bottom of my heart.

I have not started yet. I will see the doc the 16th only a week now! gosh it's hard to wait. Then I will make a regimens entry :P

Sarah, Wow! Ride your bike around the park! That's a wonderful thing. Can't wait until I can also. How far can you go? What else can you do?
You said you can't jog. I could a little about 6 months ago. I trip now though my right leg is so clumsy and behind and slow. It's like dragging around a log....uh a FLOPPY log!

I have arthritis also, rheumatoid though it was seronegative for 7 years. Does anyone else on this forum topic also have arthritis? How was it affected by abx? Feel free to pm...
Thank you Sarah for being bold enough to go out there. I love your tulip on David's site showing your return to painting. I can't say why I like it so much, only that I do. An artist's secret I guess! If you do a show in Seattle I'll come...
Blessings!
Marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby SarahLonglands » Thu Aug 11, 2005 3:20 pm

Marie,
I was under the impression that I had answered first thing this morning, but it doesn't seem to have been added, so let's try again!

I can make an addition because of this: David was very impressed by your letter to him, because you seem to know more neurologically than many doctors, including n*********s. :wink:

The park is quite small, so its not such a big deal: about 1 1/4 miles
around and I only do about two or three circuits at present, but I have found, surprisingly that it somewhat helps my balance. If I go fast enough, anyway. I only restarted in earnest a couple of weeks ago. I think I have had the strength to do it for a while, but was a bit frightened to.

What I really wanted to say, however, is that several people David treats do have reactive arthritis amongst other things. You probably have already done a pub med search on the topic and CPn..

I'm glad you like the tulip: more coming on my website in due course.

Sarah :)

PS: LifeontheIce, of course you don't!
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 » Thu Aug 11, 2005 6:35 pm

Thank you for passing along the compliment. I wondered if I'd been silly, of course HE knows these things, but I wondered if I got it. It was kind of him to give me the feedback I needed so I can be ready. He seems a lovely person. It is so lucky to have him in our corner.

I have done a search on CPn and seronegative arthritis, I hoped maybe someone else has blazed that path. Are my joints going to hurt worse than ever at flagyl time? That will be pretty bad. I just wondered. I believe out of many people I am an especially good candidate to have CPn as my issue. I also have radiculopathy and asthma. Every one of those things can be CPn. I hope every one of them IS. Can you imagine the miracle of curing several bad things at once? Radiculopathy is no picnic and often my biggest issue. Arthritis is also no picnic. Gosh.....
My old doc told me I have "bad karma" which is why I got so many yucky diseases. :lol: I think a bug makes more sense.

Anyway, three trips around a 1 1/4 mile park is a good thing. TO feel the wind in my hair would be great! I'll do that also when I can.
Thank you for posting
Blessings
Marie
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Flagyl Pulse Done!!!

Postby Katman » Fri Aug 12, 2005 6:52 am

It is Froday morning here and I am 40 hours overdue for my Avonex shot and 12 hours beyond my last Flagyl dose, 7th series, and walking better than ever. Astonishing for one who feels she has badly and underhandedly cheated the beckoning wheelchair. I have WAY too much to do to waste my life that way. Something remembered by Sarah about aches made me realize that the hip pains were probably attributable to the Flagyl this and previous times. The earlier ones were probably during Flagyl also And I thought I had sprained my shoulder last week- that is gone, too. I thought these were age-related except that they are GONE! I may go on and take my Avonex because I have it and it does improve my gait and the weekends are usually when we get a lot done but I have information that I did not before- and I like what I have learned. I never want to give anyone false hope because the second fall would be much more painful than the first. I did not have a positive CPn test so all this was very much a shot in the dark but I want to encourage thiose who take up this long, blind path. There may well be a warm reception at the end. A greeting to mrhodes (may his bad karma be cured) and LifeontheIce.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby mrhodes40 » Sat Aug 13, 2005 3:21 pm

Hi Katman! I'm a girl, Marie, and thank you! I hope my bad karma is cured also! Thank you for the update. I guess I can expect that dreaded joint pain, huh? Gosh. That will take courage, but I think I have some so it's OK.

Only three days until the big appointment. Boy I hope she goes for it! I am convinced of this approach being the right one for me. Gosh it's been hard to wait. But a friend of mine who is interested in the stars told me it was great fortune that I have the appointment for the 16th as mercury is retrograde until the 15th and I'd not want to be starting anything new then, so just by luck I avoided more bad Karma.... :?: Well Ok! so now I'm going to get the stars involved :lol: I'll take every help I can get.
Thank you to everyone who is so kind with their time. I'm getting in this boat, so it is nice to know there are amigos.
Marie
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Postby LifeontheIce » Sun Aug 14, 2005 10:09 am

Good morning, ladies, and anybody else, whoever is reading this today!

Great fortune is awaiting everybody who is taking the antibiotics. Marie is still anticipating it. Fredrica already started having the lucky streak with her "good days", Sarah is cycling around the park. I do run two miles a day, when time allows, with my daughter and our three crazy dogs. The dogs pull out so hard and my only concern is, if I fall, how my poor knees will look.

I don't remember exactly when I stopped completely being tired. I think it was sometime in spring. I do sleep about six hours when I am not up during the night delivering babies. Before the diagnosis I used to have well over 30 deliveries a month, occasionally it was slightly above 40. Afterwards I limited myself to 15 a month. As I got better, I accepted more patients, now it is allways above 20.

As impossible as it might sound, I never stopped working. MY hospitalization happened when I was supposed to be on vacation in the Dominican Republic. I came back to work exactly when I was expected to. I had no choice. My only daughter was in college and it would be impossible for my husband to support her through. At that time I hoped to see her finish her third year.

It might be of interest to you, Sarah, that she graduated last year from the Chicago Art Insitute. She is a painter and worcoholic like me. I am very proud of her.

I am writing this to prove that complete recovery is possible and am living proof of it. A few months ago I took multiple IQ tests and I scored above 130 in all of them. Not bad for someone with half of the brain missing!
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Postby mrhodes40 » Sun Aug 14, 2005 6:56 pm

WOw! Run 2 miles!! What a jock! Right after I ride bikes with Sarah, I'll come run with you. We can discuss my stunning medical research on the mind body connection ( it's in my head now, though I floated the idea at the UW so I'm just waiting for the rest of my body to get set to go do it. )

You are an edss 0 now I take it. What might you have been before?

I'm about a 4.5 or 5. I do use a cane when out but I can walk 900 feet wobbly but I can do it. As recently as a year ago I could run slowly on a treadmill and only for 1/8 mile. I would not dare a bicycle. Balance issues.

I think I'll make a video before I begin and archive it. That way I'll be able to see the changes.
Marie
"I choose better karma"
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Postby LifeontheIce » Mon Aug 15, 2005 5:23 am

Marie, I am quite sure my EDSS is 0 now, but I was not on the bicycle for the past 10 years since we moved away from the forest bicycle trails. I was never graded. I had to be in the range 5 to 5.5 at the time of the hospitalization. My last exacerbation started about three months earlier and my functional decline precipitated in astounding speed. In August 2002 I only had numbness in my face. In November I was all stiff, very ataxic, things were falling from my left hand, any "stupid" movement would send me flying to the floor. The patients were asking me if I was allright and I was lying that I had minor labirinth problem. All my right shoes were ruined from what my left foot was doing to them.

I lost the ability to think, read and concentrate. I was losing important things. I forgot my beeper number, answering service number, locker combination in the hospital. My written words were missing letters, my handwriting changed. I did not remember words, names, dates. I forgot about the patients I had to see in the hospital, I did not know the day of the week anymore. I was unbelievably tired, yet I would wake up every hour of the night. I did not feel the left side of my body when I was in bed. I felt like a hunted animal.

The final blow was, however, my MRI. I lost all hope at that time.
Last edited by LifeontheIce on Mon Aug 15, 2005 4:27 pm, edited 1 time in total.
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Postby SarahLonglands » Mon Aug 15, 2005 5:34 am

But we must remember, ladies, we are just anecdotal! Never mind that we are doctors, nurses or the partners of doctors.

Marie, I think 'jock' must mean something different over your side of the pond! I have decided to stick to my two wheeled scooter until the schools go back. Actually, its great fun, like being back at junior school! I was only doing it to see if I could, but I end up so shaky, with nerves, at the end of it. Too many toddlers and dogs at the moment.

Good idea about the video Marie, but do beware that at some stage your walking might well go off temporarily. Mine did.

After my next scan, I am going to try to work out how to post a few of the images as evidence!

Gosh, Barbara, I don't think I could just have carried on working throughout. I did start again quite soon, but my studio is only one floor down from the bedrooms and one up from the living rooms.

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 LifeontheIce » Mon Aug 15, 2005 6:12 am

Sarah, it means the same. Marie, I cherish the compliment!
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Postby SarahLonglands » Mon Aug 15, 2005 7:22 am

Barbara, over here "Jock" means a Scottish person! :wink:

But I do think you have done amazingly well to get you daughter through her last year at college......and still manage to go jogging with her.
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 LifeontheIce » Mon Aug 15, 2005 7:38 am

Here means an ass kisser.
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Postby mrhodes40 » Mon Aug 15, 2005 9:05 am

Well, gosh. A jock is a guy who is very athletic because of his Ahem! personal athletic wear.
To call a girl a jock-here in Washington State- is to compliment her that she is every bit the equal of the boys. That is what I meant. I thought us Washingtonians very ordinary and without quaint local colloquialisms :? .

A jock is a Scottish person? Is that an unkind word then? When I come to ride bikes I wouldn't want to make a mistake over there :wink:

Gosh, Ice. I agree with Sarah... how you kept working! Wow! Stern stuff. That's you.
Thank you for the quantification of where you are and were in terms of edss. What a precipitous drop from that August to November! And I do appreciate the information. It's probably dull to keep taking care of newbies. Thank you from the bottom of my heart. My hubby is encouraging me to put all these comments in a little book to read on the bad days. My own little encouragment book. I have a feeling that there are days that you wonder if you did the right thing...Your imagination maybe gets the best of you and you think this is not proven...this can't be good. That will be a great time to have these comments with me ready to read.

Thank you for the time and energy
Blessings Marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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