Still Not Done Yet

Tell us what you are using to treat your MS-- and how you are doing.

Still Not Done Yet

Postby Notdoneyet » Sun Jun 04, 2006 8:57 am

I have been following the Wheldon protocol for the last year and a half and recently stopped full time treatment. A week ago, I wrote to David describing my experience since stopping full-time, antibiotic treatment.

I wrote, "Well, I've been off antibiotics since April 15 and in the last couple of weeks, I've noticed a few problems creeping back. I have been experiencing more violent spasms(worst in two years) in my legs with increased frequency of incidences. My feet are feeling like they have pads on the balls again; the beginnings of "hot dog foot". Tingling seems more pronounced. My walking and balance seem to be slightly worse and last Wednesday, on the golf course, I took a spill and dislocated my finger. It was my first serious fall in over a year.

I am fearing that I didn't eliminate the bacteria completely. Do you have any advice for me? I am looking forward to hearing your thoughts."

DW replied, "That's disturbing news, but it does seem too soon for the infection to come back, after prolonged eradication treatment. It's more likely that stopping the doxycline (which has anti-inflammatory properties) has allowed the inflammatory process to resume. In your place I'd think about re-starting the antibiotics, and seeing if that pushes it back again." 

I've started my first intermittent pulse two weeks early hoping that things might return to what had become normal. I've been wondering if my mind was playinf tricks on me, when my friend, Phil, who also recently stopped antibiotic treatment, noted that the tingling in his hands was heightened.

At least no one can say that antibiotics have no effect at all on MS and it reinforces the knowledge of how far I've come. I'm still much better off than when I started and the new feelings are mostly sensory. I will be more seriously concerned if things continue to deteriorate.

Colin
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Postby bromley » Sun Jun 04, 2006 9:31 am

Colin,

Perhaps in your case the doxycycline was having an effect against the MMPs rather than CPn?

http://www.thisisms.com/ftopict-2261.html

Some similar research showed that minocycline was good at regulating the immune system and reducing the number of lesions etc.

Not saying that CPn is not involved but some of the abx may be working in a different way.

Ian
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Postby Notdoneyet » Sun Jun 04, 2006 11:08 am

Hi Ian,

At this point, I'm not sure what to believe. I still buy the whole cpn story, but am willing to believe that the antibiotics can act in additional ways, as you suggest.

My mother, who worked as a TB nurse in the 50's and 60's, sees parallels to Tuberculosis and fears reinfection or more properly, that the infection was not completely eradicated. She fears that stopping and starting treatment will lead to the antibiotics becoming ineffective. I read somewhere on CPn Help that Vanderbilt recommends treatments of one to three years.

Colin
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Postby Anecdote » Sun Jun 04, 2006 11:40 am

Hi Colin,

What a shame when you were doing so well. At least you had the good sense to write to David about this, rather than just sitting, worrying about it. There is no doubt that both doxycycline and roxithromycin have strong immunomodulatory powers, azithromycin somewhat less so, and as David says, it is unlikely to be a return of the infection in such a short time, especially if you re continuing to take NAC. I stopped full-time treatment after just over a year and as luck would have it, I got absolutely no return of symptoms in the couple of months before doing my first intermittent dose, which just goes to show that no two people are the same. If it had just been the immunomodulatory powers working, then I might have experienced a return of symptoms even earlier than you seem to have done. I still now am getting subtle improvements and have had had absolutely no adverse CNS event for nearly three years now. Stratton at Vanderbilt certainly recommends treatment of up to three years, also introducing much more vicious abx such as a combination of rifampicin and INH which you just can't take without being under the care of someone used to them, because they can be so damaging, however, the fact that I have not had return of anything bad would seem to show that this is often just playing on the safe side, especially after Vanderbilt introduced flagyl into their regime. Your mother might well be right in saying that maybe the infection hadn't been completely eradicated in your case, but you need have no worry about stopping and starting the abx you have been taken. They were chosen by microbiologists so that they would not lose effectiveness by doing so.

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 gibbledygook » Sun Jun 04, 2006 1:00 pm

I hope you start feeling better soon. I myself have noticed the most improvement on INH and rifampicin, two non-immunomodulatory antibiotics. I still get strong reactions when I take metronidazole so I will only consider intermittent therapy once these reactions have disappeared. I'm rather expecting to be on antibiotics for at least 3 years.
Today I suffered my worst hayfever for 2 years which I attribute to no longer taking the immuno-modulatory antibiotics and so I have decided for the rest of the month of June to resume doxicycline and roxithromycin as well as the INH and rifampicin.
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Postby Notdoneyet » Sun Jun 04, 2006 1:11 pm

Hi Sarah,

I noticed a slight return of symptoms soon after stopping treatment, but wasn't sure. The fall helped convince me and gave me some time off to put it all together. MS has been an up and down trip and recovery has been no different. I think that I will see what this little pulse does, particularly the metronidazole and develop a strategy from there, in consultation with my doctor, of course.

Thanks for your concern and valued input. I am not and have never been sorry that I followed your lead. The experiment continues . . .

Colin
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Postby Notdoneyet » Sun Jun 04, 2006 1:31 pm

Hi Gibbledygook,

Possibly I was too eager to get off, but we'll see what happens. Good to hear what others are planning. Thanks. I was feeling pretty much the same whether on or off metronidazole, so figured that I might have won the battle.
I have been feeling quite well overall and missed just three days of golf due to my latest injury. I only played three days last week and four the week before. I am still quite happy, although a little sore.

Colin
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Postby Katman » Fri Jun 09, 2006 2:36 pm

Hi Colin

Very sorry about your fall. I hope you are recovering quickly so that you can get back to your game! Not certain why I chose this very day to visit your thread but after reading what happened I will not entertain any thoughts of changing my protocol of 21 months. Any return close to where I was is unthinkable. As sure as I am that I am steadily becoming clear of this hideous bug, I am sure that you will return to your earlier plateau of capability. I believe Dr. Stratton discusses in his very earliest patients one who stopped too early and regressed. Thanks for the reminder and best luck.
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 Anecdote » Fri Jun 09, 2006 3:42 pm

Rica, we are stepping in to unknown territory slightly here, because I stopped full-time abx after a year and have been fine with just the two monthly top-ups. Colin was sensible enough to restart his first intermittent dose early and will probably now stay on it for longer. He will be perfectly alright in the end. Some of Stratton's first patients did regress, but they had no idea about times then, also the regime was started before the importance of flagyl was understood. I walked 4.5km last Monday without realising it until David measured where I said I had walked. I checked, and he was right, so no regression there. I probably did too much though because I was wobbling around like anything, until today. I think we are all still guinea pigs in this, but Colin will be as right as rain in no time.

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 Katman » Fri Jun 09, 2006 6:52 pm

Yes to all ot that. Sometimes I feel that the very first were willing guinea pigs which of course makes us second generation guinea pigs!

How exciting about your hike - let's call it what it is. There are lots of "normal" people who couldn't do that. I know that you must be very happy and have now set the standard again!

Colin, are you walking more of the course, niow? Which finger was it?
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 Notdoneyet » Fri Jun 09, 2006 10:23 pm

Hi Sarah, Rica,

Thanks for inquiring about my condition. I've been taking doxycycline and azithromycin for about a week now and am getting fewer spasms, reduced tingling and more feeling in my feet. I have been out on the golf course every day and am walking better, as well. I played golf five days this week and only missed three days over the past two weeks, due to medical appointments.

I dislocated the ring finger on my right hand. I was walking down a steep slope when I fell, so I had further to go to hit the ground. When I got up, my finger was bent backwards in an unnatural way. I thought, "It's probably dislocated, but I can't possibly pull on it and put it back in."

Next thing you know, I had manouevered the finger in properly and was bending it fairly easily. It was extremely painful and I'm sure I was in shock as lay on the ground, for a few minutes, recovering. My doctor was quite impressed with me when the x-rays revealed a perfectly natural bone structure. It's still a bit swollen, but is coming along nicely. I also pulled all of the muscles in my shouder, which I didn't even notice until my finger stopped hurting so much.

Fortunately, I have been involved in sports all my life and am proud of the fact that I'm still getting up after I fall down. I'm not really walking much more on the golf course, but I am playing well this year and seem less tired on finishing. I am able to walk a half kilometre an hour faster, on the treadmill, than I was able to last year.

Speaking of guinea pigs, I have an athletic, but slender frame, so my pen name in the local MS publication. where I discuss my antibiotic journey, is "skinny pig."

I think that my depreciation and subsequent improvement could be due to the anti inflammatory properties of the doxycycline as was suggested by David and Ian. I will have a little better idea of what is going on after completing a pulse of metronidazole, but I am leaning towards staying safe and doing one more year on the regime. I would decide then if continued use of doxycycline is required or solve the inflammation problem in a different way, if it is still there

Colin.
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Postby Notdoneyet » Thu Jul 13, 2006 4:41 pm

Folllowing a suggestion by LGM, I contacted Dr Stratton of Vanderbilt to get a second opinion regarding my restarting full time antibiotic treatment after quitting for a month and having some symptoms resurface. I have been taking antibiotics for over two years. Following is his his reply:


Dear Colin-

I suspect that some persons may need up to three years of therapy. We have an ongoing study in MS patients in which the treatment is going to be three years. As your symptoms returned, I would definitely go back on therapy for at least another year. The good news is that one can go back on antibiotics whenever the symptoms recur, so no matter how long one is treated, if symptoms recur off treatment, one simply goes back on treatment. Hope this helps.

Take care.

-Chuck Stratton


Thanks to Dr Stratton for his help. I was quite pleased that he answered my email. We are so lucky to have experts like David and "Chuck", to help us out. If it was just up to my GP, I think I would never even have started antibiotics. While I'm not thrilled to be back on full time treatment, the small break was nice and the treatment really isn't that hard to follow.

My golf scores have been getting better as my dislocated finger heals. I shot an 82 last week.

I'm wondering if doxycycline increases sun sensitivity more, the longer you take it. I've practiced the same behaviour over the past three years with regards to playing times and sun exposure. This year I've experienced some severe burning that is a little different from a normal sunburn. I've had to take to wearing pants and a long sleeve shirt for protection and things are slowly normalizing. Possibly the sun is more intense this year than last. I did not burn like this in the previous two years despite having basically the same exposure.

Also, I seem to have lost DW's email address when I lost a hard drive. Could somebody please refresh me, as I would like to update him on my decision to continue treatment?

Colin
Last edited by Notdoneyet on Fri Jul 14, 2006 4:41 am, edited 1 time in total.
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Postby Anecdote » Fri Jul 14, 2006 2:34 am

Hi Colin,

Glad to hear that your dislocated finger is healing and that your golf scores are getting better!

Certainly here we have a very hot, burning sun this year, more so than last. I'm not on antibiotics at the moment and haven't been whenever it has been sunny this summer, but I am still very affected by temperature. I'll let you know next week, if my normal habit of factor 15 sunscreen liberally applied is not enough for me. I always try to lurk around in the shadow of trees, though, when there are any.

That was a nice letter you got back from "Chuck" - he is much more communicative these days. David's email, by the way, can be found at the bottom of this page of his newly designed site: http://www.davidwheldon.co.uk/ms-treatment1.html Its a new one which he can access at home as well as at the hospital, which due to the current unreliability of the hospital server is probably a good thing.

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 yguner » Sat Jul 15, 2006 6:24 am

Hı Colın,

Thank you for postıng Chuck Stratton's reply to your emaıl .And as you saıd we are so lucky to have experts like David and Chuck .

Good luck wıth the treatment,

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 Notdoneyet » Sat Jul 15, 2006 9:43 am

Hi Guner,

It certainly was reassuring to have Dr Stratton's opinion. I thought others might appreciate seeing it, as well. And the best part is, I still may have a lot more improving to do.

Sarah, they're saying the greens are hard and fast in Liverpool for the Open golf championship next week, so they must be getting dry weather and some sun somewhere in England this year.

So, I guess I'll go another year envying you, Sarah. It could be that I don't really have to, but I'd rather be on the safe side. Thanks for the email and again for all your guidance.

Colin
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