This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,
There is quite some time that I don't show up. I started the antibiotics treatment in May of '05 (doxycycline 200mg and
roxithromycin 300mg per day) and since August of'05 flagyl with the help of my GP . Until now I have done 10 flagyl pulses.

I did not react much to the two first antibiotics. But when I add the flagyl
pulses and felt very tired, sleepy, with stomach pain and with brain
"frog". I did not find out any improvements then.
Lately , I can say that I don't feel so much tired as I felt last year and the
brain "frog" is gone, bladder is more or less the same (maybe somehow
better) and my walking is the same (no improvements at all) . Also, I can
notice during the flagyl pulse that my legs stiffness is not so strong but
immediately after the pulse the stiffness comes back again.

Now, I need some help from Sarah since I couldn't reach her husband to ask for more advice. Could you, please, help me Sarah?
Thanks

Teresa

Hello Teresa,

David is on vacation this week, working at home on papers, but he can be contacted on his new email address, which you can find at the bottom of the page here:

http://www.davidwheldon.co.uk/ms-treatment.html

This address is checkable either at home or work, so if you write there he will get it sooner than later.

The way you react when on flagyl seems par for the course, also the fact that you didn't react much to the first two antibiotics. Some people have massive reactions and this tends to be taken as a positive sign, but apart from some fluey symptoms when I first started, I experienced very little.

David always says that the main thing with any treatment is to first stop the downward progression of the disease. If you have done that, it is a very big first step. I know you weren't as bad as me, but then neither was your disease so active, so it is very likely that you will find it more difficult to gauge any improvements.

I don't know if you have looked at David's page recently, but there is a lot of new information on it, especially on the qualities of various supplements which you might find useful.

You might also care to contact Katman, aka Rica, who has PPMS and took abx for quite a few months before she showed any improvement at all. Her husband is an obstetrician/gynaecologist,she used to be a professional violinist, and they both farm dairy goats in Carolina. She is now doing amazingly well.

You can also find more information here: http://www.CPn Help.org. Both David and Charles Stratton from Vanderbilt have given a lot of information, and many people who write here also write there.

Take care,

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.

Thank you for your quick replay and your support.
I have been seing those sites you have mencionated and I have got many information that I could used.
I could see there is a new adress of your husband and I going to try it, since I do need his advice now.

Regards
Teresa

Hi Teresa
It is wonderful to hear that you are doing well , not "best" yet, but not worse, which has to come first. This takes a long, long time and as you said "I think my leg is not as stiff at times". (I have not the ability to quote from your text so iI am paraphrasing). Congratulations on stopping progression; as Sarah said, that is a big step.

It has been 22 months for me on abx and supplements with 22 pulses of flagyl and not only am I not dead or in a wheelchair, but I go all day which usually is at least 16 or 17 hours.

Rica

_________________
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.

Thanks Rica,

It's good to know good examples from others.
My objective (with my GP) was to try IT at least during one year and that year is almost gone now. I will have to decide if I continue or not and how to discontinue.

Regards
Teresa

Hello Teresa,

David just got your latest email and will reply over the next few days. You didn't say awfully much about your present condition, though. The main thing is to discern whether you have got any worse, as someone with progressive disease, because this would be the normal course of events within the space of a year. If not, you would seem to have at least halted the disease. This is the first step. Anything beyond that will initially depend on where your lesions are and how easy it is to find new pathways around them. You have to be determined. Looking back over your past postings, it would seem that you have halted progression, but that is only going by what you have written. The most promising thing in your latest posting is that you say you have got rid of the brain fog. That is very good, although I have known a couple of people who were happier when they had it, because they didn't want to face the cool light of day. Have a think about whether there is anything else you can tell David.

Take care,

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.

Hi Sarah,

Brain fog is the worst that can happen to me. I’m still working and intend to keep working. I’m an engineer and as you can imagine i need a clear brain to going on. Also, for anything else in my life,
though .I don’t intend to put my head under send just because I have MS. I’m a very determined person but also rational and if something is not working with me (we are all different with MS) I will start looking for another possibilities.
With all this I’m not saying I’ll stop this treatment but only that I’m looking for medical advice about it.
Comparing my actual situation with the one I had last year and think the disease is not progressing (also my GP thinks the same) and I have some improvements like:
- clear brain
- more energy
- not so tired
- bladder a little bit better
On the other hand, my walking capabilities are not better and my stiffness increased specially in feet and legs , which turns my walking worse. I know that spinal cord injuries are not “easy” to repair and maybe it ‘s too much to expect it will with this treatment.
This winter was difficult to me because it was so cool (and yes I’m talking about portuguese winter with temperatures between +5 and +10ºC).

I’m feeling happy to know you and to receive your answers which make me feel not so “lonely” about MS.

Hi Teresa,

I always thought from your very first postings that you were a very determined person, but rational at the same time. There are no end of completely irrational treatments that people will put themselves through and gain absolutely nothing from them. Lots of these cost an awful lot of money as well.

David is back at work on Tuesday, so will certainly be writing to you then. However, in the meantime, after reading what both your GP and yourself think about the progressing of the disease, for someone with SPMS and spinal injuries, I think you are correct. Clearer brain and more energy were two of the first things I noticed, or rather, other people noticed about me. You are right about brain fog being one of the worst things that can happen. It crept up on me without my realising it. David saw it and experienced a lot of anguish, I didn't because I had convinced my self that I was getting better, so didn't need an MRI or anything like that. I look back now and can't believe that I really thought that, but I did. However, it was one of the easiest things to clear. Once cleared, though, you can see things in all their awfulness so sometimes you can wish you were like you were before.

Maybe in the very near future, stem cell treatment will prove to be the best thing for long term, persistent spinal injuries, once the initial cause of the disease has been cleared up. At the moment, though, it is not only very expensive but also the people offering it have not been shown to be the most reliable. Things can change very quickly, though, as you in your profession will know.

I'm glad you feel happy to know me and that I make you feel a little less "lonely" about MS. Please don't hold back from writing whenever you feel the need because there is nothing worse than feeling like that when you do.

Take care,

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.

Well, I cant give you any "medical advice", but i can let you know that I am on the antibiotics as well as Lipitor and LDN.

Hi Teresa,

You sound about similar to myself in terms of your level of MS progression although I haven't (touch wood) had the brain fog. I also work full-time. As with the other comments, I also think it is reasonable to try various treatments in parallel eg Abx, LDN, Lipitor etc. which is what I am doing.

I note you are from Lisbon, so I wanted to raise with you the prospect of Stem Cell Therapy. I don't have the details at hand but there is a Portuguese centre doing some marvellous SCT work. You may have researched this yourself already but if not, let me know and I will retrieve the details.

Cheers,
Phil.

Hello all,

It’s nice to be able to talk to people like you all. I agree with you that stem treatment maybe the future for us. But “future” is far away, and may be too late for some of us (and I know what I’m talking about, as I had some MS friends that already died). Don’t misunderstand me I’m a very positive person and I think we should always look for ways to stop this disease.
Regarding the portuguese centre as far as I know, they are not working with MS people but people with spinal cord injuries. Anyway, I would like to see your information, Phil just to confirm we are talking about the some.
Teresa

By the way, I'm also on LDN since last year. I think it helped stop MS progressing but at the some time I have much more spasticity.
About Lipitor, how did it help you?


Teresa

When I first started takin Zucor, the tingling in my hands went away (after stopping rebif as well). I then found out Lipitor has a profile for better anti-inflamatory effects, so i switched.

The tingling in my feet faded more. I personally feel that I can feel a difference after a few hours of taking the lipitor. I previously responded well to prednisone, but the statins appear to be helping better.

Thanks,

I will talk to my GP about Lipitor. Any complications with Lipitor?

I admit that I was taken in by all the publicity on statins for everything! I had even tried Lipitor myself for MS, but saw no improvement. Now, after reading Overdo$ed America by John Abramson, M.D. (a MUCH appreciated book recommendation by NHE), I have a more skeptical opinion of the whole drug scene.

On page 145 specificallyaddressing statins and heart disease, he writes:

And later on the page:

It may take years for cancer to develop. I don't know the doses involved here either. All this may serve as a caution. I no longer agree with the idea I've heard, "We should just put statins in the drinking water." Perhaps they are not as free from side effects as I thought. Your doctor should be watchful for this, as well as liver function and possible rhabdomyalysis (muscle breakdown, I believe, characterized by leg calf pain). Lots to talk over with him!