MediTest
27 Apr 2018
Author
Sarah
Title

Trent's queries

Comments

Hello Trent, you might well not be new to MS but you are more than welcome here!  I started this new space for you because you were a bit lost where you had put yourself.Nothing can be promised from this treatment but hopefully you will at least be able to stop progression of the disease and hopefully get some improvement as well.  I hope your GP will be willing to try treatment..............Sarah     Journey through Light and Shadow  

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

 Sarah I’m still waiting on a delivery of NAC to see if I get a reaction.I have bee taking most of the list of supplements for many years, though a few are new. I think I read that most posts are from folk having a hard time, and that those with few problems tend not to post? But from what I read I‘m worse off than many; how bad might it get? I‘m in a wheelchair/bed 24/7. My right arm/hand have gone on holiday; my left hand I can type only with one finger. I can’t turn over in bed or adjust my position in bed or wheelchair, and I cannot stand. On the plus side I don’t have any brain fog; I don’t have much pain - some minor neuropathic pain along the outer edge of my left foot in bed some nights; In general, apart from the MS(!) I am quite healthy. I think my immune system is good as I rarely get colds, coughs or sickness, even if my wife succumbs, despite a constant stream of carers who change over the week; You were 65 when you started your treatment. My MS started at least by 1975. I’m scared that it might not work for me. Does that happen? I, like you, am an artist - not botanical but land and townscapes, loosely in the style of John Yardley. I’d love to get back to that. Can you give me any general hope/advice? . 

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

Trent, I think you are muddling up me with Rica because when I started treatment I was 45. My MS did start in the early nineteen eighties though, but I started getting better pretty quickly. It doesn’t happen for everyone though and David was worried that because I had the disease most of my adult life, I would have become truly auto-immune and so it wouldn’t work for me. It did though, and I think on reason might have been that apart from MS, I was very healthy and until a few years before starting put most of my friends to shame in the amount I could do, running and walking wise. I rarely had a cold and I gave never had influenza. When I went downhill, though, it started very quickly: in just a couple of weeks. Like you, I didn’t have much pain, but I did have plenty of brain fog and I did the most unusual things like letting doors slam in other people’s faces or stand, waiting for an upright piano to fall on me in an auction room. You are right that people only tend to post when they are having a hard time. I only post now in order to give help to other people. Although my work is suffering, I wouldn’t have it any other way. Once you start treatment, I would say that the best thing is to keep trying with your art, just a little every day. At first my work was dreadful and I just ripped it up, but gradually it improved. This is one of the first things I did which I was happy with: http://www.avenues-of-sight.com/1a-Sarah.html And this is my most recent work online: http://www.avenues-of-sight.com/12-11-%20The%20Four%20Magi.html ............Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS 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 your post. It gives me some hope that I may get the benefit I need. I'm sure the courage to step off the cliff and make a start is probably the biggest step of all. I'm reminded of the Chinese saying that every journey begins with a single step. My right hand won't hold a paintbrush at all, and m left makes wild uncontrollably marks - but at least it is something else to aim for. You are right to be proud of your artwork.Chris

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

Chris, I know about the wild, uncontrollable marks!  I am completely right handed but I did try with my left.  My mother showed a slight lack of tact by sending us a Christamas card done by a foot and mouth artist for two years running.................Sarah    Journey through Light and Shadow  

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

2013-04-11? was the date your reply said you were 65 at the start - obviously a typo, but I didnt mix you up with Rica!I'm set on ordering my doxy in the New Year.I'm due for an MRI of brain and spine etc on Jan 13. The appt letter mentions a Gadolinium injection to enhance imaging. Is this as safe as the appt. letter claims?

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

Hi TrentI am finding so many similarities in our MS. I have had MS for about 35 years and I have been on abx treatment for almost 5 years. I am "a little younger" but I don't think the age is very important with MS. Now I am only improving - it goes very slowly but it goes. During the treatment I improved in a lot of things.Comparing with you - my right hand and arm was very weak, I had problem to hold things without falling, I couldn't handwrite. Also my left hand started to be weak. Now my hands are ok. I can even carry 2-3 kilos and I can do whatever with them - any work.I also couldn't turn over in bed - I lied all the nights only on back. Now I can turn over in bed.I also didn't have much brain fog but there was some. During the treatment I got bad brain fog firstly but after 2 years it had gone and when I must work with figure now I have some headache but after a while it's better. In fact I never could work with numbers and could remember numbers. I also didn't have pain but I could walk and use my hands less and less. Now I can walk better but I have pain when walking. Isn't it strange? I think that's the loss of sensitivity when I didn't have pain. I could burn myself on the stove very badly and I felt nothing. Now - it's really horrible pain. So my sensitivity is back. Also what's interesting - before treatment I could walk 3-4 steps and I had to stop as my legs wouldn't walk more. Now after 50 meters of walking I get pain in back and legs but I still can walk and my walking isn't effected anyhow that there is the danger of fall or tripping. Only pain stops me from walking but my legs can still walk. I walk with 2 trecking poles.Also before the CAP I hadn't had any flu or cold for maybe 25 years. I looked after my ill children and I never got ill. So I think there is much alike between our MS. As you can see I got much improvement and what's the most important the progression is stopped. I was very close to a wheelchair (I could walk only up to 20 meters with problems and several stops). I think you should give a chance to abx treatment. If only you can stop the progression and any tiny improvement in addition is fine. And I can confirm if someone is better he attends the site less. I also do so but not because I don't want to help with advice but because I work more and more so I am busy to spend much time here.    

MS for more than 30 years, WP since July 08, break Jan 09-March 09. NAC 2x600mg, Doxy 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDN, supplements.Since May 2013 without abx.

Evita,Thank you for taking the time to respond to my concerns. It is good to see how someone has improved so much from a position close to mine. I hope to be able also to improve as you have. I think I must learn to be as patient and determined as you, and others lik you.

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

Trent,I am also an artist with ppms. I solved the making art problem by getting photoshop and hiring a tutor to get me started. All you need is one finger on a mouse.While I have posted work on this site before, it is probably easier to see it at nancyungarfinearts.com.Nancy

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Sarah,I came across another member in Lincolnshire, as I am. Is there an easy way to discover if there are other members who have Lincolnshire doctors as the number would be a useful piece of  evidence to present to my own GP shortly, in that the Lincolnshire Health Trust is favorably inclined?i have redefined my location from East Midlands to Lincolnshire. To be more precise.Chris

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

Trent, I went into the system to change it for you, but it's already changed.  You must have been successful in your attempts! 

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

Trent - I assume it's Northcircular that you have come across. So Macintosh was correct when she suggested you might be neighbours! You certainly couldn't be in better company than Northcircular. I'd been thinking you might be Nottinghamshire, given the 'Trent' name.There's the 'user list' on the left hand side menu. I once spent many hours scrolling through that to see who was in the UK.  Bear in mind though that many listed there no longer visit the site  now, or at least not on a regular basis. It's reassuring that there can be life after Cpn! A private message can always be sent though, just in case.There aren't all that many of us in the UK, and I can't think of anyone else local to you who is posting at the moment. Cheering you on like you would never believe!

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Welcome TrentThe fact that you are inquiring is, to my mind, enough to put you in this camp of ____.  Fill in the blank with whatever you think is appropriate, from trailblazers to nuts.As for your age and "condition",  if you can get the stuff, do lots of reading here, and still want to do it after that, my response will always be - go for it.  I was around 65 when I began and, far from being in a wheelchair where I was definitely headed, I am walking, breathing, swallowing, and only fatigued when I am being "worked on".  None of it has been easy, and I would do it again (which I am). Read David Wheldoni's list of supplementsi, read the Getting Started at the top of the page (tab), read some Patient Stories, maybe the Handbook, and start asking questions.Rica

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

Hi Trent, pleased to make your aquaintance, I think it is brave of you to start on this stuff at your age - well it might make you totally new!!  The chance is there anyway and I think its well worth taking - seems there is no other help out there for us with ms - so just have to hope that you have an agreeable gp to prescribe you the anti - b's.  I am English but am living in Ukraine - mad I know, but my hband is from here and I bought a flat in Kiev and a small wooden house in a village outside Kiev very cheaply back in 2000, just after I first got the ms diagosis - Dr's are pretty useless here, and they are everywhere for ms (the main good thing about here is that anti biotics can be bought without prescription)  So hope you get on well with all the prescriptions, they are a very friendly bunch on here and wil answer any questions you may have.regards, Suzanne

diagnosed RRMS 2000 - had v little trouble til 2009 when changed to SPMS - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abx 24.08.2

Hi Sarah, Rica and Suzanne for your  welcome. Naturally I hope my GP will be positive,  but I have a lot of reading to do here first before I embark on that. I have prepared a letter to him, saved on my computer - I keep tweaking it as I think of other points.One problem is my lovely wife - of nearly fifty years - we are true soulmates but each time I come across a new 'idea' - as this is, she baulks at it and finds it extremely difficult to come to terms with a new direction and associated thinking. It results from my continual remorseless attempts to get on top of this life - wrecking disease. I seem to have tried everything over the past thirty - five years, the most recent being CCSVI therapy in Edinburgh in 2010. She told me this evening after I had described the website and treatment etc that the effort of coming to terms wiith yet another possible 'no go' idea makes her feel suicidal. Yes she says, I know you are getting worse..... It led to a difficult hour or two. Hopefully she will feel better tomorrow.So, I'm sorry to be going on like this, but I guess this isn't such a big deal on this site. We had a pleasant morning out - just collecting the w/e newspaper and going to a garden centre where we had lunch. We had to rush home to be in time for my carers to put me to bed for the afternoon. It was only my second day out of the house since November. We have a hydraulic hoist to get me in/out of the car, but its use strains her back. I'm sure you'll be fed up with all this rubbish, so I'd better stop. I think I feel a bit better after all that.Thanks to all those wh read this far.Chris

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

Trent, Quite the opposite; we're a different kind of crazy here.  We get perverse pleasure out of people giving their wheelchairs to others who 'need' them, who go from selling off their herd (hi, Rica) because they can't manage the animals, to buying them back again because they CAN manage the animals.  We like it when someone who made the rounds of many of the emergency rooms in the U.S. no longer has to deal with that kind of thing.  We don't mind going through the crummy stuff with you, if it gets you to a much better place.And, tell your wife we'll be more than happy to help get her through it, too.  Cool  Hey, is Northcircular reading?  Maybe you are neighbors???

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

Mackintosh thanks.Now, can someone put me stRaight? If I do the antibiotics, and if they work, do I get a worsening of my symptoms? Herxheimer effect? Does this confirm things are working the right way? And if so, how long  from start to this point where I might know if I were on the right track?

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

Hi Trent,Yes, you'll have a temporary worsening as the bacteria are killed. Are you looking to just confirm an infection? If so, I'd suggest doing the 'NAC test' first. N-acetylcysteine (NAC) is an amino acid that can kill Cpn elementary bodies (the life stage that spreads the infection). Their destruction would cause respiratory (sinusitis, runny nose, mucuous…etc) and flu-like symptoms. To perform this test, the patient should start with 600 mg a day and build up as tolerated to 2400 mg.  If they feel miserable, then they definitely have Cpn. This supplement would not make a non-infected person feel sick. There is no set time frame. Some people react immediately to the NAC and some end up reacting to a higher dose.Jen

Hi JenTHank, that could be just what I want, though I already think of myself as a dog with a wet nose, and I have a lot of mucous. Is this significant?

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

I getl my NAC today.should I drop my usual supplements while I do the test?

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

I vote no.If you change more than one thing, you'll always wonder which one caused your reactions.  Therefore, make just the one change, which is NAC.  If you have a reaction, you'll be certain it was the NAC that caused it.

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

Thanks, I can see the sense in that. When it says start the NAC at 600mg, how many days/ doses before rtcheting up towards 2400mg?

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

I have been doing this since October and I am still only taking 1200mg a day.  the NAC makes me feel very ill so I have not increased it for some time.  I am thinking about increasing it but have not as yet.It is better to take things slowly. good luck.

MS Diagnosed 07/03/05, copaxone Jan 2011 to Jan 2013, started doxy 13/10/12, started roxy 06/11/12, increased doxy 28/11/12. first metro pulse 01/01/13. Tini Dec 2014. Fampyra,B12,Vit C,Vit D3,Vit E,Vit K2, NAC,ALA,AcetylL-Carnitine,Fish oil,

Hi Jen,Another symptom I have, perhaps related to a runny nose is that my left eye smetimes streams for no apparent reason. Could this be significant too?

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www