What gives!

Hi Guys, it has been a while since I last posted. So as an update.... I was diagnosed with Multiple Sclerosis in Aug 2006 after an MRI scan prompted by difficulty in walking.

I started the Wheldon protocol in Aug 2007. I was full-time for just over one year and then I went intermittent. I have continued with intermittent with no problems and no reactions to the abxi. With regards my condition, I made huge mental gains on the abxi, but my walking issue has remained much the same. It is not very bad in that I can do most things, the hardest activity is walking. I can walk perfectly normally for about 30-40 minutes and then I start to have problems moving my right leg and lifting my right foot.

This has all been very stable and consistent until this month (August). I went on a one week holiday to Greece, where it was hot and sunny (yoo hoo). Since coming back my walking/movement has been worse. When my leg tires it is worse that it has been for the last 2 years; it happens quicker and it takes longer to recover. So I am not experiencing a new problem, but it seems to have intensified.

What puzzles me is:

a) why does my problem become active after 30 minutes of activity? Surely if there is damage on my spinal cord it would be active at all times.

b) Why have I worsened recently? Could it be the increased exposure to the sun and Vit D for a week; could it be that my nervous system is going through a re-ordering process that will lead to improvement; is it a to be expected part of the ups and downs of nerve damage; or am I just getting worse?

If anyone has any thoughts on this I would be very interested.

 

Comments

  ''I also have the

  ''I also have the thought, at the back of my mind, that I just have MSi, that the CPNi<i< theory is just a theory that keeps me in denial of the reality of my situation (what most doctors would think).''

  Malcolm, that's a strong fear I feel at the depth of my heart. Nothing is proved and Nobody knows exactly what's going on inside. We are all just trying to be hopefull. There are some really encouraging stories (but if you are pessimistic you can think that these happen in MS always). We don't have any statistical data; how many MS patients are on CAPi, howmany of them show significant improvement, howmany were stablized and howmany continiue to deteriorate.

  I would like to get a blog about this issue; every body could post it's own thoughts about it's own progress. since we don't have a control group (who has MS and take another treatment) and people may not be objective truely, our data woulndn't have a scientific value but ıt could give us an opinion at least.

  In your special position, I believe that you should start to continious CAP, CPN really seems to be a very difficult bug to eradicate.

   yılmaz

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Malcolm, when you were

Malcolm, when you were diagnosed with MSi, what type was it?  If it was PPMSi you wouldn't expect relapses, but if it was RRMSi, you have had no relapses since starting treatment. 

Being a person who could formerly walk or cycle great distances all day with hardly feeling tired, I would now love to be able to walk as long as you without feeling fatigue.  As it happens, I am stumbling around like a drunkard way before that.  Maybe what you are experiencing now does denote a big leap forward shortly, I don't suppose anyone knows for certain.  You could always go back on full-time treatment for a few months if you are really worried, or just start your next intermittency early.  I did once, but I felt no difference and gained no benefit, but then, that was just me......................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks Agatha, I agree it is

Thanks Agatha, I agree it is a matter of wait and see...

Sarah, I don't have a diagnosis that states either. My initial dxi was from the radiologist, he was very clear that I had msi and told me. His report states:

 "In the brain there are several periventricular and deep white matter high signal lesions supratentially bilaterally, with several in a typical peri-callosal distribution for MS with some thinning and involvement of the corpus callosum.

In the spine there are also further multiple lesions throughout the cord with the largest lesion at approximately C2 level. No other significant findings"

I was then referred to my local neurologist, but I decided that I did not want a lumbar puncture, so left it at that. I then, a little later, went to see an MS specialist, Eli Silber, in London. His summary of our meeting states:

"He has a demyelinating plague in cervical spine. He has a number of lesions within the brain, these are predominantly peri-ventricular with at least one or two juxta cortical lesions. There are no lesions in the posterior fossa. These scan findings would fulfil the Barkhof criteria for MS."

That is it in terms of dx. I have chosen not to pursue the help of the medical profession.

 

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

Thanks for posting this

Thanks for posting this Malcolm - I am only at the beginning (4 weeks into treatment) but I know that theses discussions will be of great benefit  to refer to  if and  when I get to the stage you are describing. 

It sounds as if the only thing you can do is wait and see - if things improve, then great, the symptoms were a sign of repair, if things get worse then perhaps CPni is starting to rear its head again and the treatment needs to go back to a more aggressive form (some people seem to change antibioticsi in this situation).  It must be horrible in the meantime, wondering what's going on - I hope things improve rapidly for you.

Agatha

RRMsi diagnosed 2008 (symptoms for 20 years). Also sinusitis, recurrent UTIs, IBS  Wheldon protocol began 31/7/09 Doxyi 200mg, Azithro 250 3X week.  Supplementsi B12, D3 Vit C, multivit, Fish oil, probiotics, NACi, vit E, turmeric

Malcolm, I very much have

Malcolm, I very much have ups and downs, doesn't everyone, even completely healthy people?  If you have new pathways to contend with in addition, one slight knock throws them completely askew for a while.  Humidity is one of the worst things in summer and I only ever get headaches before a thunder storm.  If I get a virus, it doesn't last long anymore but all my strength can drain out of me for that time.......................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah, thank you for you

Sarah, thank you for you response. I understand that we all have ups and downs, of course. What I want to understand is whether my current condition is to be expected or whether it is a sign of deterioration, or even if it could be a sign of my nervous system doing a re-organisation.

Last November I got a bit panicked as I was experiencing some new symptoms: numbness around the mouth, distorted taste and sight problems. When I spoke to David, he described this as peripheral neuropathy and a sign of my nervous system rewiring itself a little. He predicted that it would clear up after a week or two. He was spot on and not only did it clear up I had a distinct gain in my hand eye coordination and visual clarity. So what started as an alarming development was a fantastic improvement.

Now again I am a little alarmed as my leg is problematic most of the time, with lots of sensations in both legs. Now I remember before I was dxed I had a problem with my right arm. At the time I thought it was rss, and it was exacerbated by working on a computer, and resulted in a feeling of weakness. I started to get strange sensations of hot liquid travelling down my arm, which was pleasurable. I think the hot liquid feeling was a sort of healing process. So I am hoping that my current exacerbations are actually a good sign, the trouble is I also have the thought, at the back of my mind, that I just have MS, that the CPNi theory is just a theory that keeps me in denial of the reality of my situation (what most doctors would think).

That is my dilemma!

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

Malcolm, I would write to

Malcolm, I would write to David to ask what he thinks. 

You might think that if you have spinal chord damage it would be always there, but not so: it is very much amplified by all forms of stress and fatigue.  I used to say that I didn't have spinal chord damage, but this wasn't so: it was just that my jolly neuroi didn't think it was worth giving me a cervical MRI because I was too far gone. Now, I still can't walk normally for as long as you, but I am still improving bit by bit.......................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah,I talk about spinal

Hi Sarah,

I talk about spinal cord damage because there are lesions on my spinal chord as determined by my MRIs. I assume that thay are the cause of my walking issues. David did point out to me that it is much harder to find new pathways down the spinal cord as there is less room than in the brain (at least that is what I understood). I really would like to understand better exactly what my happens in my body and I will try to contact David again with these questions.

Do you find, Sarah, that you have ups and downs?

 

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

Hi Ken, Rica & Katman,I

Hi Ken, Rica & Katman,

I think I have a different perspective than you guys. My interpretaion is that there are 2 issues: the CPNi bug and the damage that has been caused, and they are non the same thing.

So I stopped the fulltime abxi when I was not having a significant reaction to them. I do not consider the treatment to be over, far from it I expect to be abxi for another 2 years. If the thinking was that you stop fulltime when you have completely erradicated the CPN then there would be no point going onto intermittent, you would just stop. So I continue the abx on an pretty much every month basis.

The damage though is a seperate issue. If you are waiting for the abx to return you to complete perfect health, then I think you will never stop. I understand that I have damage to my nervous system that causes me certain problems. What I am interested in is how I can help my body to repair itself as best I can and to understand exactly what happens inside me.

 

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.

I'll be less correct than

I'll be less correct than Ken. You're obviously reacting to the sun/Vitamin Di, which has cpni kill-effect. Hmm... if you're still killing something, perhaps you need to be on the protocol full time for awhile longer.

Regardless, you should see some improvement, once you recover from the inflammationi the cpn-kill has caused.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

MalcolmWe are, as I repeat

Malcolm

We are, as I repeat endlessly, gathering information, and we as patients, are very much a work in progress, and I will be the first to raise my hand and say "That certainly applies to me". 

I went intermittent also, in January of this year, thinking I was done.   I did two intermittent treatments, and had I been paying really close attention, would have realized that I WAS having reactions.  My symptoms were returining in an exponential cascade.   I went on (am in the middle of)  one of the original Vanderbilt regimens.  I am convinced that this disease, this bug will stop at nothing to "get us", and if we adopt a strong denial mode, we will continue our downward journey.  My "Oh, no!" resounded again and again in my head. 

Rica

 

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Malcom,I'm just shooting

Malcom,

I'm just shooting from the hip here ....

I think that one year on full protocol is less than ideal.  You may have a lot of reasons for why you decided to go intermittent and I'll not argue about it, but from my perspective this thing needs to go more than that.  Kim walks good some days and less good on other days.  I'm beginning to think there is a monthly cycle here, but I've not tracked it so I don't know for sure.  But, sleeps seems to be a variable and definitely humidity - if you have time do some real digging on the name "Russell Johnson".

Ken

In pursuit of ABX<

Don't Allow What You Know To Get In The Way Of What Might Be