Tman’s antibiotic journey.

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

Tman’s antibiotic journey.

Postby Tman » Thu Apr 14, 2005 7:44 am

In 8/04 I had Lhermitte’s sign and numb fingers. 10/04 had MRI with 3 lesions on brain and one spinal cord lesion in the neck area. The lesion in the neck was enhanced, but there was no enhancement fluid used for the brain MRI. I had a spinal tap that came out negative. The neurologist said I had an 80% chance of getting a MS diagnosis in a year or two.

I had developed another symptom. When I would tap my leg muscle or stomp my leg hard, the muscle would vibrate uncontrollably for a few seconds. I then visited a Lyme Doctor. I had a Lyme test that was Igenex positive, but not CDC positive. The Lyme Doctor gave me prescriptions for various antibiotics and I also purchased some offshore. Although I had a selection of antibiotics, my regime for the most part was close to Dr. David Wheldon’s protocol.

There was no noticeable affect from most of the antibiotics. I started out with Doxycycline and was quickly up to 600mg a day with no affect (herx). The only antibiotic that affected me was Flagyl. Flagyl made the Lhermitte’s many time more severe and made it spread from my legs, to my back and to the “family jewels”. It also made the numbness in my fingers much worse. It also affected my emotionally. I would cry at TV shows and even commercials. I was brought up as a redneck farmer who very seldom cried. Up until that point the only time my wife had seen me cry was at the birth of are first child. This was quite severe for the first couple of pulses. It took a couple of weeks after the pulse to subside. The following pulses of Flagyl got less severe, with the last one having almost no effect on my symptoms. It still made me feel crappy.

I also followed a similar supplement protocol as Dr. David Wheldon’s. It is easy to get many varying opinions on supplements, so I will only point out a couple of changes I made. Above I explained the vibrating leg symptom. The Lyme Doctor recommended taking Magnesium. Not Magnesium Oxide that does not get absorbed very well. I tried a couple different kinds and ended up taking Magnesium Malate at a dose of 600mg a day. This appeared to cure the shaking leg, but it could have also been the Antibiotics. I have since cut the dose back to 200-400mg a day. The Doctor also recommended DetoxMax+. This kind of expensive ($50 a bottle, 2 doses in a bottle). I do not take a lot of this but I believe that it helps clear things up after a Flagyl pulse. I take a couple of doses, a couple of weeks after a pulse and it makes my symptoms better, I believe.

The beginning of this month I had another MRI. This was ordered by the Neuro and they used the MS protocol. This protocol consisted of two hours in the tube with an IV so the contrast could be added easily. This was a lot more through MRI than the first one. The results were that the brain lesions were the same and the neck lesion was less pronounced. None of the lesions were enhanced. The Neuro, who originally gave me little hope, this time he had a little optimism. My symptoms have improved, but are not gone. The Neuro gave little hope for the repair of the lesion in the neck that is probably causing the Lhermitte’s sign and the numbness.

So, did I have CPn, Lyme? The Neuro says possibly a one time demyelinating event? I also have to accept that I could get an MS diagnosis in the future. I think that my story gives more antidotal evidence to the infection theory and I am glad that I have given antibiotics a try. I have an appointment with the Lyme Doctor in early May and the Neuro has ordered another MRI in 6 months. I obviously will stay on the antibiotics.

Tim
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Postby Anecdote » Thu Apr 14, 2005 8:00 am

Gosh, yes, you must! You need to stay on the antibiotics for at least a year, otherwise you have the danger of things coming back. To my way of thinking it doesn't matter if it is Lyme or CPn since both are very difficult to detect and also react to the same antibiotics. The very best of luck with your continued progress. I will tell David about you as soon as he gets home.

Sarah :)

edit: It has just occured to me that maybe people in the USA who are finding difficulty in getting doctors to treat them should find someone who specialises in Lyme?
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Postby Daunted » Thu Apr 14, 2005 9:31 am

Anecdote wrote:edit: It has just occured to me that maybe people in the USA who are finding difficulty in getting doctors to treat them should find someone who specialises in Lyme?


This is worth a try; if you go to the Lyme forums, you will see that using Rifampin is common, and pulses of Flagyl are all the rage in Lyme treatment, also.
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Postby Tman » Thu Apr 14, 2005 1:51 pm

Of the antibiotics talked about here, the Lyme Doctor prescribed Doxycycline, Flagyl, and Zithromax. He has also extended the prescriptions for Doxy and Flagyl. He originally prescribed it in two different ways. One was for 30 days straight and the other was to rotate it 10 days and 10 days on another antibiotic. I only have taken it in pulses (7 days is my record) with the Doxy. I am interested in Rifampin. I will give the Lyme Doctor info on the Wheldon protocol and the Vanderbilt protocol and see what he thinks.

Tim
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Postby Tman » Fri Sep 16, 2005 10:15 am

I have recently had another MRI. The MRI showed no change in the lesions. I obviously would have liked them to be smaller, but staying the same is better than more. My symptoms have improved somewhat. The numbness in my left had is much improved, gone sometimes barley there other times. The right hand is slightly better and the Lhermitte’s sign is about the same.

The neurologist gives little hope for the lesions healing. Originally he thought that I would probably get an MS diagnosis in 1 to 2 years. Now with no new lesions he is not very sure what to say. He scheduled me for another MRI in a year.

In general I have been following the Wheldon protocol. I plan on staying on full time antibiotics for a few more months, then going to intermittent antibiotics.
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Postby Anecdote » Sat Sep 17, 2005 5:00 am

I have recently had another MRI. The MRI showed no change in the lesions. I obviously would have liked them to be smaller, but staying the same is better than more. My symptoms have improved somewhat. The numbness in my left had is much improved, gone sometimes barley there other times. The right hand is slightly better and the Lhermitte’s sign is about the same.


Tim, this seems to me like very good news. As I said in ljm's post, some of my lesions are never going to go completely, but being a small area I can work around them. If your neck lesion has been in place a long time this might stay with you, but shouldn't get any worse. Sooner or later you might even be able to work round that one.

Sarah :wink:
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 Tman » Fri Sep 08, 2006 6:37 am

It is now 2 years I have been loosely following the Wheldon protocol. I have been treated by a lyme doctor so I have strayed from the protocol a little, but for the most part I have followed it. I stayed on ABX full time for 1.5 years, before going to intermittent therapy. I slowly tapered down the ABX, and the break I am on now will be the first time I have gone the full 6 weeks without ABX.

My symptoms are about the same, possibly a little better. They were not that severe to start and the changes are slow, so it is hard to tell.

I had the 2 year MRI yesterday and ONE LESION IS GONE, and the rest are the same and not enhanced. The Neurologist was very optimistic and scheduled another MRI for next year. Originally he planned on stopping the MRI’s at 2 years if there was no change.

I hope others find this news as encouraging as I do, and I would like to thank the Wheldon’s for all the info they have shared.

I will let you know the 3 year MRI results.
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Postby Anecdote » Fri Sep 08, 2006 8:03 am

Tim, yes, in your case, with symptoms not that severe, things slow to change, it will be difficult to tell, except you aren't any worse and one of your lesions is gone, the rest the same. Carry on like this and it looks as though you are never going to get a definite diagnosis on MS: that's the way to go!

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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