Also getting better on antibiotic regime

SarahLonglands · Post by **SarahLonglands** » Wed Apr 12, 2006 10:18 am

Colin, David makes a point of replying to all his emails, so it must have gone astray somewhere along the line. From what you say, it must have been about the time that the hospital changed the email addresses to make them more "friendly". Quite a few which I sent him never arrived and an address is only friendly if it works. His latest one doesn't have these problems. He will be writing to you tomorrow.

Robbie, have you read all of Colin's story? He has progressive MS and is somewhere in his forties. By all rights he shouldn't now be able still to golf, but in fact he is getting better all the time, due to antibiotic treatment. Have a good look and think about it yourself.

Sarah

Notdoneyet · Post by **Notdoneyet** » Wed Apr 12, 2006 10:22 am

Hi Robbie,
I've been d'xed for 22 years and have played golf continuously with only a few interruptions for health reasons. I had quit golfing when I stopped working full time about three years ago. I decided that my new job should be to keep walking and there's no better exercise to walk better than walking. It's not always been easy for me to walk, so the temptation is to not do it. It's funny how that little white ball can provide motivation to move. I watched a friend go downhill quickly after he stopped trying to walk and was determined not to let that happen to me.

Shortly after my first year back golfing, I had an exacerbation which threatened my golfing future. Through good fortune, I started minocycline then and the full Wheldon regime slightly later. Since then, I haven't looked back. My abilities keep improving and I'm hoping I can still break 80 one day. With luck, I'll be golfing for many years, enjoying every round.

Colin

Notdoneyet · Post by **Notdoneyet** » Wed Apr 12, 2006 10:28 am

Thanks Sarah,
I understand now, why I didn't get a reply, but I don't think I was quite ready then. Perhaps more so now.
Colin

robbie · Post by **robbie** » Wed Apr 12, 2006 11:25 am

hi Notdoneyet not being able to play golf is so hard for me i know it sounds funny but i love it so much, now i just watch it on tv. i am also in my 40's with ms for 12 years. spms so they say for about 3. it is so different how it affects people , i to will not give in on the ability to walk although not very good at all. am always thinking of new treratments to try and have this one in mind. i tried ldn for just short of a year and gave it up, i am slowly getting worse with or without it. i will keep watching the info on this treatment. you talking about golf just got me thinking of the good old days. rob

MacKintosh · Post by **MacKintosh** » Wed Apr 12, 2006 3:20 pm

Robbie - Then get off your couch and start getting yourself healthy so you can PLAY golf and not WATCH it. I was in a rapid decline last August, from serious 'brain fog' to optic neuritis to numbness in toes and fingers, to sponge-like painful walking to dragging my right leg a bit, to flushing hot and red, to burning feeling in the FRONTS of my 'ankles', to lisping a bit and having my left hand not as functional as my right. Virtually ALL of this has abated with antibiotic therapy, which I've been on for six months. We took a poll on CPn Help and learned the MS patients have the easiest time of it on antibiotics (chronic fatigue people have it a bit tougher), so you've no excuse NOT to start getting better now. We'll walk you through it, pun intended! By the way, considering my rapid decline last August, consider that I have been at work every day at a very physically and mentally challenging job. Let's get you in gear because every day you DON'T do antibiotics and kill this miserable bacteria is another day it entrenches itself in you.

Post by **Arron** » Wed Apr 12, 2006 4:49 pm

Let's get you in gear because every day you DON'T do antibiotics and kill this miserable bacteria is another day it entrenches itself in you.

Perhaps Robbie suffers from a form of MS that has absolutely nothing to do with CPn... Are you willing to say that *all* forms of MS derive from CPn? Perhaps you are, but science is not (yet).

You have to be careful raising false hope. Your treatment seems to have worked for you, but it may not work for everybody. Education is one thing, cheerleading is another. And various other aphorisms that I grow weary using, and you likewise grow weary reading.

Please heed my warning to Katman-- this (unabated) recruitment of members to this particular regime, however benevolent in nature (and I *DO* believe it's *ENTIRELY* benevolent in nature), will not be tolerated without necessary caveats in place. People's emotions and health are the most dangerous thing to play with, and until there is definitive clinical proof, you must acknowledge the highly experimental, potentially useless/dangerous nature of this and ANY unproven regimin.

We always support the open and free discussion of all therapies here, proven and unproven, giving rise to the wide array of brilliant discussions occurring daily on these boards. However, the attitude towards these anecdotal therapies must be balanced with the risk, and in almost all cases--even with LDN(!)-- they have been.

There are a lot of vulnerable people when dealing with a disease like this, and you must acknowledge the risk that they might be taking. Don't promise things you cannot deliver without a shadow of a doubt. And I'll point that these tactics are very sales-like in nature (e.g., "guaranteed recovery, now!"), and are seriously undermining the credibility of this potentially exciting treatment.

I know you're trying to help, but so am I. Thanks for understanding.

MacKintosh · Post by **MacKintosh** » Wed Apr 12, 2006 7:08 pm

THIS POST HAS BEEN MODIFIED BY THE POSTER:

Arron - Duly chastised, although I have no knowledge of what you may have written to Katman and really can't be held accountable for every comment in every thread here. My life is thankfully again too active to spend hours here on the board like I did when I was at my most debilitated stage and that is a very good and healthy thing.

Everyone - My apologies. I am not and have never promised anybody an all-inclusive 'cure', but I'll tell you what; I was in a truly hopeless mental place and in a severe and rapid physical decline eight months ago. I have never understood the rationale or the likelihood of MS being an autoimmune disease where the body just decides one day to 'chew on' itself without rhyme or reason and if you think I'm cheerleading, well, I probably darned well am. As far as getting someone's hopes up, YES! My view is that's better than sitting on the sidelines, sliding toward a wheelchair or worse and bemoaning your fate, isn't it? Hope is healthy. Hope leads us to learn, to research, to strive, to try and try again. Dear God, I didn't come to ThisIsMS last September because I had QUIT trying!!! I came here to learn how I could beat this horrendous disease. And, by golly, I did learn how. Not from a forum, but right on the front page of the headlines section of this website, in a story only minimally related to the cpn protocol I now follow.
Because someone right here on this board encouraged me and helped me and held my hand through the mess and the maze and a fairly good load of resistance, I am walking, running, not debilitatingly fatigued, thinking eminently clearly again. I am not some used car salesman nor am I some dupe or shill. I have a rather high IQ and I wanted to retain it for the rest of my life, so I knocked myself silly to find what works. I have nothing to gain, nor does anyone else who endorses antibiotic therapy, except the personal satisfaction in seeing more and more people enter the dark end of the MS tunnel and watching them start to emerge happier and healthier.
We do surveys over on CPn Help(dot)org and we also know of a large number of patients other than those who post here (or over there) and I have not yet been made aware of any individual the protocol, followed reasonably properly, has not helped. Yes, that's saying a lot, but that happens to be the truth. That should be celebrated.
This man is in his mid-forties and he is an adult. He'll make his own decisions, I guarantee you. He had already stated he was thinking about doing this, but was hanging back. And he has since posted that he is starting, and he posted that PRIOR to my alleged 'cheerleading' post, as it turns out.
Perhaps Robbie does suffer from a form of MS that does not derive from chlamydia pheumoniae bacteria, but if he does, shall we encourage him NOT to have treatment on the off-chance he won't recover? We abx-ers have consulted with our physicians, obtain prescriptions, have way more lab tests than most lab rats, we've been through the gamut of neurologists and herbologists and naprapaths and chinese medicine practitioners and, by necessity, we know our medicine and our science up and down and back again. None of us is forcing an antibiotic pill down anybody's throat and none of us possibly could. But, like a friend said just today, eventually we healthy people, healthy because of antibiotic therapy, will just flat-out outnumber everybody else.
Good grief, there are still doctors, decades later, who refuse to accept that stomach ulcers are caused by Helicobacter pylori bacterium! But that doesn't make it any less true. Then again, there are also people who think the earth is flat.

Katman · Post by **Katman** » Thu Apr 13, 2006 5:43 am

Thank you for saying so eloquently what I know is true.

Rica

Notdoneyet · Post by **Notdoneyet** » Thu Apr 13, 2006 7:13 am

Today is a very special day for me. I don't have to take any antibiotics for the first time in almost two years. David emailed this morning and I am on intermittent treatment now. Yeeeee Haw! Thank you all for your support.

SarahLonglands · Post by **SarahLonglands** » Thu Apr 13, 2006 7:21 am

Great, so that's three of us now! Well, out of people that post anyway. Have a good weekend.

Sarah

Brainteaser · Post by **Brainteaser** » Fri Apr 14, 2006 7:16 pm

Hi MacKintosh,

I appreciate your emotional and stirring support for the Abx regimen and I am extremely grateful to sites such as this and CPn Help for providing the hope and treatment alternatives to address MS.

Just to bring some balance to your perspective, (I think) that no-one you know is not being assisted by Abx, I can inform you that I have been on the Abx regimen since January 2005 and to this point I can not say one way or the other whether I have been assisted - the jury is still out.

To put things in perspective, I have had PPMS for almost 25 years and am EDSS 6.5, although I still work full-time. I accept that on a comparative basis to other MSers, I might be 'a tough nut to crack'. I have noted the opinions of the Abx experts that this treatment may need to be continued for up to 3 years.

So, at this point I am not necessarily challenging your general viewpoint because I am hopeful and quietly confident that something positive might occur with me. If you can 'get me over the line' I would think you hypothesis might be proven. However, for the moment I thought that it might be helpful for you to know that there is me, and possibly others, who are still doing the hard yards.

Regards,
Phil

MacKintosh · Post by **MacKintosh** » Fri Apr 14, 2006 7:49 pm

Phil - I remember seeing something in David Wheldon's protocol (and pardon me, but I have read so much it all kind of runs together, especially late at night

) which said outcomes are uncertain if there is spinal involvement. I know Guner is only now having sensation in his lower spine after a couple of years of abx and, while that's wonderful, it does go to show how slow recovery (if there is going to be any) can be. My next MRI is planned to include the spine and I'm apprehensive about it, to be honest. Kind of 'if I don't know, then it isn't really there' mentality right now. (Also known as ostrich-mode.)

I should probably take this to private mail, but I'll tell you here, publicly, that I am hugely impressed with your fortitude. I know a lot of people would chuck it, with no certain improvements, on the basis 'this isn't working'. (I wouldn't, because I believe in the science and the rationale for the protocol, but I can certainly see how human nature requires reassurance, especially in so deadly serious a disease as MS.)

Like you, I figure the bacteria has been rampant in my body for a minimumn of thirty years and I kind of expect it will take a few years to undo what damage I still can undo. So, I fully understand what you're saying. Vanderbilt or Stratton, can't recall which (Sarah? Marie?) is now saying some will have to be on protocol for five years. Daunting, but then again, I'd take abx every day for the rest of my life if it would end the disease. Life being a series of trade-offs, it is what it is.

My enthusiasm is for the daily, sometimes hourly, good news I keep seeing from people who had no hope months ago (myself included), who are now rising from the scooter, moving to the cane, rising from the chair, feeding themselves, shopping for themselves for the first time in ages, attending family gatherings and not tripping, falling, or failing in some way. Yet, I wish my own darned feet would stop tingling altogether and I want my 20/10 vision back and I would really appreciate it if those once in awhile pins and needles sensations would go away completely. (I've had serious improvement; don't get me wrong, but I want it all and I want it NOW. So there.) So, thank you for your measured and thoughtful response and let's both hang in there. Now I know of one person who's unsure if they've been helped. Phil, the odds are in our favor. I'll pm you.

wiggy · Post by **wiggy** » Sat Apr 15, 2006 7:41 am

MacKintosh,
As you know I am just ramping up on this protocol and want you to know I appreciate your every word.
I am not sure this will work for me and everyone who has MS knows that they been working on the MS puzzle for years with 0 treatments that work for everyone.
You have great enthusiasm, are you stating that this is going to work for everyone? Not from the posts that I have read or maybe I am interpretating your words differently than others.
What you are telling me is here is a treatment you can try while they continue to work on their "successful" drug trials, some examples, Avonex and Tysabri, Avonex and Novontrone, Avonex and Doxy.........................we may be talking 10-50 more years. I am a little over it

I told my sister yesterday, I can try this treatment while they continue to work on others and if by chance this works for me, I will be talking about it on television for all the people that can't get to their PC because they are bedridden with this disease.
Thanks for your help and support

robbie · Post by **robbie** » Sat Apr 15, 2006 11:01 am

I guess it comes down to having nothing left to lose, decisions are eaiser that way, good luck everyone.
_____________
Don't stop believing. Rob Gates

MacKintosh · Post by **MacKintosh** » Sat Apr 15, 2006 12:47 pm

Robbie and Wiggy - Thank you. I guess, if one reads any single one of ANYBODY's posts one can interpret it however they wish. Anybody who has read more than one of my posts knows I have been there and done it. Last August I was in the deepest, darkest hole that the combo of hopelessness and steroids could take anyone to and it was not pretty. Robbie, 'nothing left to lose' was pretty much the description of it. I read the statistics on the abc drugs and I could not see much point, particularly since the scientific community could not even agree on WHY a couple of them work or what the actual mechanism of their very limited successes might be. Scares me to inject something that unknown into my body if I don't have to.
Then I read about an obscure experimental oral drug, based on an antibiotic, that was being tested by some small drug company. From there, a google search found Sarah's story and David's web page. From there, I did a thorough background check to see if they were for real and I read, day and night, everything I could find about chlamydia pneumoniae infection and treatment.
Wiggy, I DO still think, for MSers, there is more to come. I kind of think tysabri or some other method of remyelization, will be necessary for some, but I just don't see much reason for not trying the abx route now, as it is connected to so many diseases, not just MS. Basically, if abx won't hurt you, but might help you, why not do it? Particularly in light of how many people abx 'seems' to be helping, with MS, with high blood pressure, with rheumatoid arthritis, with chronic fatigue. I detest seeing people spend boatloads of money on iffy 'cures' when they can spend a fraction of that, can maintain their normal lives while undergoing treatment and can wipe out an infection the bulk of the population has contracted by the time they are middle-aged.
You are both so kind. I've had a rough week being publicly taken to task and privately brutalized. Kind words are really welcome right about now. Like you, Robbie, I wish us all well (double entendre intended). If there's anything I can do for either of you, just say the word.