This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello, everybody!

I am a 47 y/o physician, who was diagnosed in November 2002, after having MS for 15 years. At that time I was hospitalized immediately following a horrible MRI. It showed a brain edema and an incredible load of the lesions. I was given IV Decadron, while the neurologists argued with the radiologist if it was a brain tumor or a severe encephalitis.

At the time of diagnosis I was a hopeless, miserable creature. I thought life was over for me. I was incapable of any thinking. My memory was wiped out. I could not feel the left side of my body, had problems with balance and walking.

My colleague, an MS specialist, refused to treat me and I was referred to a university professor. Out of desperation at the end of November I started taking Lipitor 80 mg a day, while waiting for an appointment.

I never became his patient. Two weeks on Lipitor made me slightly less confused. By the end of January, 2003 I did not have any neurological symptoms, except for the occasional stumbling on my bad leg. The MRI in late February showed that 90% of lesions disappeared. There was no MS activity.

At the end of May 2003 I additionally put myself on the MS-Direct diet and supplements. Another MRI in August showed more improvement, so I continued my regimen religiously.

In April 2004 I found out from Sarah on the MSRC about the antibiotic therapy. For the first time there was hope to get rid of the MS permanently. I had another MRI in May and there was no change since August. In June I started the LDN and Dr. Wheldon protocol, which I promptly stopped in July after getting all sorts of minor MS signs back.

At the end of August I realized sudden improvement in my memory and decided that it happened because of the antibiotics, In October I had another month of the antibiotics. Same story, the MS symptoms reoccured.

I continued on Lipitor, diet and LDN. Then I met Daunted who thought it was a Herxheimer phenomenon that happened to me. Since February I have been taking antibiotics. I am doing great.

This sounds so like me two years ago! 'My' neurologist just said that I must let the disease take its course and there was nothing he could do for me. Luckily I was married to someone who felt differently, who had studied neuropathology at Oxford and who had seen the very worst of what can happen to people who were deteriorating as rapidly as I was. So, a week of research later I was put on the antibiotics and have not looked back since. It has been a bumpy ride, but all in the right direction.

I remember replying to your posting last April and have often wondered how you were doing, but since postings vanish to rapidly on the MSRC site due to the way it is organised and since you wrote as an unregistered person, I didn't know how to get in touch. This site is far better: it is the only place I bother with now!

Sarah

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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.

Sarah, I always thought it was debatable who was worse at the beginning of this journey. Your story and mine are so similar. I inquired Daunted about you and was very glad you were doing so well.
As a matter of fact three of my MS patients, who know about us, are inclined to start the antibiotics. I always thought about you and me being the only two people in the universe who made it. Now, I see there is quite a few of us.

Lifeontheice-- great name and thank you so much for joining and sharing
your inspiring story. It is quite instructive to hear how a doctor
deals with MS when the diagnosis is on themselves and not on a patient.
Thank you again.<br />
<br />
And Sarah, that was a sweet compliment-- much appreciated We're very
glad this site has been a good platform for your remarkable advocacy
efforts. <br />
<br />
Best to all,<br />
-arron<br />

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Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

How to begin? I feel I have stumbled on a group of old friends. This is what I have been looking for all day. I began on the Dr. David Wheldon regimen 9 1/2 months ago. I have been Primary Progressive for 10 years but diagnosed only 1 year ago. Two months ago I began improving and the progress has become breathtaking. I will do my 6th Flagyl next week. How many of us are there and why are there not more? I will do my best to increase the number, at the same time reiterating that this may not work for us all. And I have a questiion: If one recovers, does a spinal tap show no oligoclonal bands? I have been following the Wheldon site for a long time and want to say thank you to his wife, Sarah. I am a retired symphonic violinist.

Hello Katman,

Being incorrigibly nosey, I have just looked at your profile: Do you keep goats? And if so, what sort? If so, you must definitely write to my husband, since this is one of his desires when he retires.

He would also be very pleased to here of someone with primary progressive disease who is benefiting from the regime. You ask "How many of us are there?" I don't know, but I guess there are more than you at first think. My first thought, as a cool, reserved and to some people slightly aloof English person, was to just get better and get on with my life, but I would have felt guilty doing that, so I have ended up talking more about myself than I ever have done before.

As far as the spinal tap goes, I guess that the oligoclonal bands will remain for a while as the endotoxins are gradually removed. I have never had one so don't know what mine would have shown in the first place. Likewise, on an MRI scan, there will very likely always be some scarring from very old damage. I am having another scan sometime next month, after a gap of a year, but I guess there will still be quite a lot of old damage showing, although I feel certain nothing new! I think the main thing is to go by how you feel: if your symptoms are in reverse, then that should continue, but how quickly and completely will depend, say, on how much damage is in your spinal chord. Luckily I had very little. I still can't play my 'cello very well, though, but I was only a learner to start with.

Once you start on intermittent treatment, you can always go back to longer pulses if you feel something coming back.

Sarah

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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.

Hi Katman,

I am so happy for you. We are very lucky to get the best treatment available. If only more people tried it. I am grateful to you, Sarah. for sharing your amazing recovery with all MS patients. I e-mailed Dr.Wheldon with my story and gratitude in June 2005.

I joined the NMSS forum in September 2003 to discuss Lipitor, but no one took me seriously. It is a bad site sponsored by the CRABs makers. All they could say was that I was in remission. I remember the poor reception your story had on the MSRC. I guess it is because it's impossible for them to believe that one can get so well having such a bad start.

I basically manage MS myself. I never had a brain biopsy, because of the brain edema at that time. I didn't even have the lumbar puncture and am not planning one. My last MRI was in May 2004. I am going to have one after finishing the antibiotic therapy. I feel the test does not matter if the treatment is working.

Katman, did you order the antibiotics on your own? Tell us more about your improvement. I seem to be thriving on this kind of news!

To Lifeontheice This is the second message. I am not so good on the computer yet.

We live in a close community and my husband is a pediatrician so it is fairly simple to get these drugs prescribed. Now that they arer working ithere is a lot of cooperation. We must make great noise. Please let's talk some more tomorrow.

Katman

Hi Everyone!

Sorry to put my nose in this! As I am not diagnosed with anything, one could say I have no place to open my mouth about improvements. Only I know how I felt back in November last year when my symptoms started and I got a new one nearly every week until I started the ABX treatment in Feb.
The worst thing was that at first I thought that was the end, there is no cure, I just have to wait to get worse and to be diagnosed. The worst thing was to lose all hope for a normal life and fear that in a few years I will not be able to look after my children.
Then I found this site and Sarah's posts and it was like finding a tiny star on a very dark sky.

I just feel so sorry for all the people out there who are going through the same thing, but don't have a pc or internet and can only turn to their doctor and very likely not be offered antibiotics to try, but instead some 'poison' that will only delay getting worse.

I too wish more people would just give it a try. There is nothing to lose but so much to gain. I too am not someone who talk a lot especially not about myself, but I can't keep quite, because I still can't belive how lucky I am to have found Sarah's posts and Dr. Wheldon and that something so simple as taking antibiotics turned my life around.

Lifeontheice:

You said "if only more people tried it." I wish I could. You are an MD, Sarah had access through her husband, the new person's husband is a doctor. I just met with my PC doctor this afternoon and finally said, "how do you feel about alternative treatments?" The answer was, no, with a long-winded explanation that I might as well not have heard. Double-talk, essentially. I have never been very good at talking to doctors, been thrown out of a few offices, and mostly feel like I am getting the bum's rush. I usually wait a long time and see many other people waiting in the waiting room. I feel pressure to get through and get out for a variety of reasons, some I couldn't even describe. The doctor I saw today wants me to go to a neuro and said to suggest alternative treatments to him. I will do that soon (can't right away, have been to the doctor every week for a month and just can't cope with any more) but don't know what to say. I don't want to take advantage of the fact that we have an MD on this site but what better person to ask? How do I ask if a doctor would consider veering off the beaten path?

Sarah:

The last picture you posted made me think of Frida Kahlo again.

Jaysee! You don't need any doctor. Just order the stuff through the internet. I got my Roxithromycin without a prescription. Don't delay! Good luck!

GPlover I am very pleased to hear that you are another living example of how miraculously antibiotic therapy works in many cases. You were expecting to be unable to take care of your children within a few years, whereas I did not expect to be conscious within a few months. Luckily, we both have made it through. I totally agree with your views on CRABS therapy.

Hello Jaycee,

Yes, you can get everything through the internet. You have to be careful, but http://www.drugdelivery.ca/ seem probably the best bet. You can get roxithromycin from them as well. Rulid is the brand name, made by Aventis. I know several people now, including GPlover, who get it from there. Yes, I am married to a hospital doctor, but he can't really prescribe the stuff himself to a family member. Luckily there are colleagues who would do so if my GP had refused. Even now I think she does it slightly unwillingly, because she hasn't sent any more patients his way.

If you ordered the stuff from the Canadian company, thee are enough people here now who would be able to talk you through it.


You meant "Erratics" I presume? That shows a good imagination on your part!

Sarah

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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.

I owe you an update on my MRI. I had it on February the 8th.

Here is what was written:

Procedure/Technique:
Multiple axial, coronal and sagittal MR images were obtained through the brain without and with contrast, and they were compared with 05/05/2004.

Findings:
In T2 Flair axial and sagittal images, multiple regions of high signal intensities are elicited in the bilateral subcortical and periventricular white matter. These abnormal areas of high signal intensities are identical in size and shape in comparison to the previous examination. There are no new focal lesions to suggest a recurrence or progression of the demyelinating process. In the postinfusional study, no abnormal enhancing brain lesions are detected to suggest an active disease. There is no evidence of intracranial hemorrhage or any type of mass lesion. The ventricular volume is normal.

Impression:
Stable and unchanged multiple bilateral periventricular and subcortical white matter lesions. As described in the last study, the pattern is somewhat atypical for multiple sclerosis and other etiologies such as infectious process cannot be excluded. The overall intracranial findings are identical with the last study.

The MRI from May 2004 was identical to the one from August 2003. There is no change in the MRI for over two years. There is huge change in me. My thinking, memory, concentration, interests are getting very close to what other people possess, or what it used to be a long time ago.

Hi I was so thrilled to read Katmans email that he had PPMS and has made a recovery I was DX 5 years ago and have been steadily declining I use a cane now and cant walk very far.......my question to anyone out there is have they tried MMS which is reportedly much more effective than Anti Biotics and does not harm any good Bacteria?..........I am loath to go on to a few years of Antibiotics if there is a cleaner more effective and totally harmless alternative?....thanks