Always an Anecdote

[SarahLonglands]

And thankyou to Roy, Ice and Katman for your postings on Daunted's thread. I am putting this here lest we completely highjack Daunted's thread. After feeling a bit down today due to being woken up by someone's burglar alarm at four in the morning, which was breaking every rule in the book by not cutting out after 20 mins, I now feel rather elated being called a 'trailblazer!'

Roy, Katman was diagnosed PPMS as was Guner, who lives in Turkey, but he is away in the mountains until the cooler weather.

Sarah

[LifeontheIce]

Dr. Wheldon's poem poignantly touches upon the experience of being robbed of what one took for granted before. Only those with the experience can fully comprehend what his words convey, while those who have not lived through it may sympathize with the speaker, but his words remain an abstraction. Especially after living with MS, a person can fully appreciate the significance of a properly functioning mind and body; one is not more important than the other. Words alone cannot even begin to describe how fortunate I feel in having dreams beyond walking again.
Sarah and Katman, I am very happy to see that you are getting on with your lives. It is a difficult accomplishment, after suffering for so long.

[SarahLonglands]

I had my latest MRI scan on Wednesday, after a gap of one year. The radiologist phoned this morning to say that having reviewed all the four sequential scans together, there have been no new lesions at all in those two years and some resolution of the existing ones from the previous scan. This lack of new lesions is remarkable in someone with progressive disease and he has never seen it before.

So, when the schools go back and the park becomes relatively child and dog free, I'll be back on my bike again, but in the meantime I have ordered some Similase (Complete Digestive Enzymes) by Tyler, on Daunted's recommendation, to help with he last of the endotoxin release. I don't think I dare plague my GP for anything else such as pangestyme, but I will carry on with the intermittent treatment for a while yet, but probably every three months rather than every two.

Sarah

[VladFT]

Dear Sarah,

grea news ! I was waiting for it so badly !

[Katman]

Waiting .... waiting... it is over. Congratulations to you, Sarah, on this great success with very far-reaching implications. And on the fortitude it takes just to do all this every day. The rewards are or can be truly precious- the ability to walk, think, ride a bike, and maybe even run again some day.

For my own current chapter, I have to relate that my hips don't hurt. Sounds pretty mundane but for about five years they have made walking, bending and turning over in bed increasingly agonizing. For the last month or two there has been a lessening and now a ceasing of symptoms. I stopped, after first lowering the dosage a month ago, taking glucosamine/chondroitin. Five years ago I saw the response of our 12-year-old Great Pyrenees to this and started taking it. Now my shoulders ache. Maybe I just didn't have enough mental attention left after working around my hips to notice my shoulders but I do now. I don't know what the mechanism is but I can live with this easily. Besides, maybe it will go away as so many things are. It is also eight days again since my Avonex and my walking and energy levels are about half my norm of past years (up from a (generously) 5% what they were four months ago) Another sympton, so noticably diminioshed, is my version of spasticity. I no longer have a fairly violent "stretching" episode after sitting or upon lying down. This has been going on for years- at least four or five of increasing severity. It is almost normal instead of involuntary. Needless to say, I am overjoyed with what is happening to me.

I have a question. The other day Sarah said "take ___ on an empty stomach. I am taking whatever it was with everything else. I cannot find that posting. Does anyone remember what it was? Thanks.

This is for Roy- be hard on yourself. If they come, and I believe they will, the rewards are many and abundant. But as you said, nothing is free. We are here to support or scold, whichever you need. Just yell.

Katman

[SarahLonglands]

Hi Vlad, glad you heard what you were waiting for, and Katman, who remembers me saying:"take on an empty stomach." I'm blowed if I can remember what that was: it doesn't sound like me, because I don't take anything on an empty stomach. It just makes me feel sick. In fact I have discovered that doxycycline is actually absorbed better if taken with food.

Another sympton, so noticably diminioshed, is my version of spasticity. I no longer have a fairly violent "stretching" episode after sitting or upon lying down. This has been going on for years- at least four or five of increasing severity. It is almost normal instead of involuntary. Needless to say, I am overjoyed with what is happening to me.

Funny thing, this, because I experieced this as well. David could see it happening, even when I tried to hide it. It disappeared very quickly after starting treatment, which is why I had almost forgotten about it. I don't think I had it for that long previously, though.

Sarah

[Katman]

It may not even have been you- could have been Bromley or Daunted. It was one of the (newly added?) antiosidants. NAC or ALA or .....

The waiting was for the results of your MRI. I think you have made history.

Katman

[mrhodes40]

Great news Sarah!
So now we have your MRI and some lesions are less and not one new one. And you with SPMS. Wow.

If you look for sequential MRI in SPMS you see a pattern of increasing lesion, even in people treated with whatever the treating agent is example: http://www.ncbi.nlm.nih.gov/entrez/quer ... query_hl=3

Try to find an instance of SPMS wherein the MRI is stable or reduced after 2 years as well as having reduced edss.
It does not exist. Sarah qualifies as a case study here, or rather an interesting story that is verifiable that indicates an interesting new direction of treatment. Of course general medicine will require a bunch of such work to have empirical proof. I can't wait to hear everyone elses MRI results....and I can't wait to see if I also have the bacterial cause for my "MS". The least that can be said is that in Sarah's case it clearly was a bacteria. How many others have this issue as well? Some? Many?

The lesion project indicates there are 4 types of lesions. It seems perhaps one type is bacterial.

I, for one, am convinced
Marie

[Katman]

We were ALL waiting for those results and they were exactly what we all expected and hoped for! A celebration is in order! I expect all of you others to carry it out. The first nero. I went to (here in town) said "You have peri[pheral neuropathe from drinking". I said "I don't drink- it makes me feel funny". He said "it's ok, how much do you drink". etc. etc. He would not believe that I don't drink. When I was finally diagnosed two years later, I called and left a message that it was MS and by the way, I still don't drink. I hear that his wife has left him. Wonder why....

Katman

[Arron]

Sarah-- outstanding news! So happy to hear things are going OK, both in how you feel as well as on the MRIs. That is remarkable.

I have to be the damper here-- Sarah is one person-- so in order to get a trend, MANY of you need to go and get better! How you do it is up to you and your doctor, of course, but certainly Sarah and Dr. Wheldon's willingness to share should help your GP/neuro decide if Antibiotics are a worthwhile experiment in your case. Compiling a list of people who have taken the therapy AND have objective before/after MRIs would be a critical step in building a strong *clinical* case for antibiotics and MS.

Ok, I'm done with my disclaimer.

So happy for you Sarah!
-a

[Katman]

You are so right. But I am hoping to be the next in a long and inarguable line of MRIs that show no new lesions. I have had 3 that were progressively downhuill; first one in Jan. 2003-- like my PPMS-. BUT the 4th, after 8 months on " Wheldon's Whammy" was "no worse" That, to me, was music. I know my neuologist will be impressed when I see him late Sept. There is no way he couldn't be. My last MRI was in June, 2005. Right now I am on day 3 of my 8th Flagyl pulse and I am functioneng better that I have for 3 years.

Katman

[Arron]

Katman, so nice to hear that you're feeling great. It's been a great Friday, folks.

[Daunted]

Sarah,

Congratulations!

Undoubtedly there are subtypes of MS and bacterial is just one of them. Think of hepatitis- there is viral, toxic, auto-immune, etc. It sounds odd but those with bacterial MS may be the lucky ones as a very effective treatment appears to be available!

(My personal belief is that many people who first present with Chronic Fatigue or Fibroymyalgia and then are diagnosed with MS, are more likley to have the bacterial type).

I take all my meds on an empty stomach but I know some people can't tolerate that. But I found this study (click here) which appears to show that an empty stomach may be helpful to absorption.

Over a long-term I am skeptical that either way would make much difference.

Again, congratulations, Sarah! At this point you really need to be written up in a medical journal as a case example, with the MRI proof and all.

[LifeontheIce]

Dear Sarah,

Congratulations!

I am extatic! So happy for you and for all of us. I only can imagine the reaction the radiologist had.

I will do my MRI in February and will see the neurologist at that time. So far he does not know that I take the antibiotics. Last time I went to his office was in August 2003. He invited me and couple friends to a dinner in March 2005, but we were not talking about my treatment at that time.

[SarahLonglands]

Thank you! It would have been nice if 'my' neurologist could bring himself to have some sort of a reaction as well. David did see him in the Medical Institute, but he just grabbed a sandwich and left. No matter!