Question from the Netherlands

A forum for the discussion of antibiotics as a potential therapy for MS

Postby SarahLonglands » Mon Feb 06, 2006 5:47 am

Me again,

You might also find it useful to contact HappyDaddy, who lives not a million miles from you and started antibiotic treatment about a year ago. He is doing very well.

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.
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Postby MacKintosh » Fri Feb 10, 2006 11:07 pm

Annemarie - Let me add my voice to the chorus of encouragement. I can't tell you what a difference the antibiotics have made in my life, and I am hoping you will have the same good fortune.
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
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Postby snackhand » Sat Jun 03, 2006 4:04 pm

Thank's for all of your helping and encouraging words,I'm gratefull...

At the time I still am willing to go for antibiotics.....my neurologist won't cooperate anymore.

Also the news about the newly discovered virus (cryptovirus) is only an affirmation that gives me the feeling that the direction I'm on is the right one......as well as your experiences with the antibiotics....especially Sarah's.......thanks again for sharing!

On the LDN I am doing fine for the time,but it's not a cure.

After 1 year of illness and recovering from my liverprobs,the time has come to take further action,first I am going to order the supplements Sarah advised so kindly,my GP is willing to do the follow-up,I have to contact him now for further arrangements.

I will let you know....take care


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Postby CureOrBust » Mon Jun 05, 2006 3:11 am

Be sure to understand, the ABX's will only work against bacteria, not a virus.
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.
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Postby Brainteaser » Mon Jun 05, 2006 6:22 pm

So, do we know what will work against cryptovirus??
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Postby MacKintosh » Tue Jun 06, 2006 12:28 am

While I'm thrilled the investigation into MS continues, where in that study does it say cryptovirus causes MS? (Gosh, I wish they'd named it something else, because it sounds too much like kryptonite for my taste, even though the name is very apropos.)

Basically, it says, unless I'm sorely mistaken, that it is 'present'. Just like in a lot of people, cpn is 'present', yet doesn't appear to be affecting much of anything. There's a lot going on inside us and any single ONE of these bugs may not be the cause. I'm not ready to toss antibiotics out the window because the virus is 'present', especially since antibiotics have helped me and so many others to recover so much ability we'd lost. It's bought me the leisure of time to wait and learn about cryptovirus. I think I'll keep popping my abx and adjuncts while I wait and not hop on the bandwagon of the next new fashion just yet.

Um, and everyone, maybe the topic of cryptovirus needs its own, un-hijacked thread?
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Postby gibbledygook » Fri Jul 07, 2006 11:21 am

Maybe we have a bacterial virus or a viral bacteria or some other kind of mutant microbe. But I'm with you on sticking with the antibiotics. After all there aren't any very cheap, effective anti-virals out there and on the whole antibiotics are safe although my personal experience of isoniazid and rifampicin affirms that these two are pretty dangerous to the liver.

Whilst off antibiotics for a while to help my rather overworked liver I've been having acupuncture. This has made no discernible difference so far.
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Postby MacKintosh » Fri Jul 07, 2006 11:27 am

Gib - How interesting! I know NAC is supposed to help protect the liver, but it's hard to know how much, or if, it's helping. I feel remiss, as I've not had my liver function or anything else monitored, since I feel so much better and have eliminated most of the MS symptoms. I suppose I'll go in, just to be on the safe side, and have those pesky blood tests....

All the best to you. When do you get another shot at abx?
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Postby SarahLonglands » Fri Jul 07, 2006 12:25 pm

Hey, stop it, you lot, and give Annemarie back her thread. Please.........

Remember that when Le Gac was treating MS with antibiotics

http://www.avenues-of-sight.com/legacpapers.pdf

it was still ten years away from chlamydiales being named as a separate group and nearly 25 years before Chlamydia pneumoniae is recognised as a pathogen in its own right. They were treating as for a rickettsia infection, and many things like this, now known to be bacteria were thought to be viruses. What is now called a cryptovirus will soon not be a mystery at all. Viruses are smaller than bacteria and can easily follow on behind the bacteria, in this case CPn, and appear to be the cause of many things, especially since CPn is so good at being invisible for much of its life. Most of these co-pathogens cease to be a problem when CPn is attended to. And I've never had my liver function tested, not having taken INH. If I turn yellow, I'd think again, but I prefer to carry on with something safe, than be told to stop because something is slightly raised and might cause trouble.

Unfortunately Annemarie knows all about liver damage through taking avonex.

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.
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Postby snackhand » Thu Jan 25, 2007 1:54 pm

I do,Sarah :(

But at the time i am well enough to start the antibiotics! :lol:

My GP is willing to cooperate and I just contacted the hospital in Bedford for a first consultation.

I will keep writing about how it is going to work out.


Many regards!

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Postby SarahLonglands » Thu Jan 25, 2007 3:45 pm

Annemarie, that's the best news of the week, so good luck! 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.
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Postby snackhand » Sat Mar 14, 2009 2:54 pm

Hi Sarah,

Long time,no see, but I'm still alive!
I read you're doing well, thats good!

I've been diagnosed with auto-immune hepatitis january 2009 besides the MS.
I wrote to David,got a message back of his retirement and decided to go on the Marshall Protocol,which I started january 2009.

I believe the two regimens are not very much different.

One reason for me was my newest disease,the hepatitis,I believe the Marshall Protocol gives me a higher chance because of it's broad range killing bacteria.

Eventually I do hope the MS will resolve also on the Marshall Protocol,the road back is a long one,but the alternatives are worse.

Thank you for putting me in the right direction!

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Postby SarahLonglands » Sun Mar 15, 2009 8:39 am

Annemarie, the two regimes are very different and I would not have pointed you in the direction of Trevor Marshall. He developed his protocol for sarcoidosis which he suffered from himself. On a "one size fits all" basis he then spread out to many different so called auto-immune diseases. He rules the MP site with a rod of iron and throws off anyone who claims not to be getting better, therefore he appears to have a very good success rate. Over at CPn Help there are several ex-Marshallites, at least one of whom was a moderator who have decided the protocol really wasn't working so have jumped ship and are now doing far better.

One very dangerous thing for people with MS is the avoidance of vitamin D and another is the fact that the antibiotics are given at least at first in such tiny, sub-clinical doses.

David has now taken early retirement from the NHS due largely to a difference of opinion with the hospital management, but he is still seeing MS patients privately, so if you contacted him I am sure he could arrange an appointment or discuss working with your GP. I will send you his email address in case you only have the hospital one, you can then discuss the auto-immune hepatitis with him as well, but autoimmune hepatitis will never be cured by the antibiotics of either regime.

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.
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Postby MacKintosh » Sun Mar 15, 2009 10:06 am

Oh, my goodness. Sarah, you're too kind when speaking of the MP. SO many studies, only in the past year, are very clear that depriving the body of Vitamin D is flat-out dangerous! Not to mention, Wheldon's protocol was researched and designed by medical doctors, not an engineer. Continuing cpn research confirms and expands on the original findings, which our treatment is based on. Not so, with the MP.

Low D (as directed in the MP) contributes to cancers, first and foremost. That's enough for me. I'm taking 10,000iu daily and will probably remain on high intake of D for life.

The MP also directs that one use SUBCLINICAL doses of antibiotics. This will result in resistance, as well as being ineffective. Double loss.

Annemarie, My personal opinion is that protocol is flat-out dangerous. If you go to cpn help (dot) org, check out Reenie's posts on the MP (she is the former moderator who was kicked off the site when she started to report negative outcomes and questioned the protocol). Also, read Red's Vitamin D pages (there's almost too much to read, but it's all recent and valid studies showing the need for increased Vitamin D supplementation, especially for those of us who are ill).

I'm glad you found antibiotics, but science proves cpn cannot be killed in all its life phases unless you use the three abx on the Wheldon/Stratton protocol. Believe me, if there were another way, we'd be doing it.

Me, I figure I'm 98% recovered from where I was three and a half years ago. I decided way back then that the MP couldn't possibly work.
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Postby furch » Mon Apr 13, 2009 2:45 pm

Since you like the game of "Smear the protocol", I feel I have to say something in the defense of the mp:

I have like Annemarie decided on the Marshall protocol. I feel there is no point in starting a fight here in which protocol is the better..

Why not respect the fact that there are other antibiotics protocols which you may not agree with personally, but may well be effective?

If one has decided on the mp, the commonly held opinions about vitamin-D and antibiotic-resistance is a finished chapter. The fact that the mp is controversial isn't a surprise..

personally, I seriously considered the CPN earlier, but decided on the MP simply because I found it to have better statistics, and logical rationale behind the research.

Sarah, you say mp-patients are scared into claiming to be better when they aren't? That is a straight out lie probably based a modified rumor put fourth by someone holding a grudge against Marshall for reasons unknown. This statement is really childish and is plain fear-mongering.

You are actually saying Marshall scared all the people interviewed on bacteriality.com are scared into saying they've gotten better?! http://bacteriality.com/category/interview-patient/

are you also saying that all the doctors, hundreds of doctors, prescribing the MP, are scared into this as well??

That Trevor scared the staff at China west hospital into starting a mp-trial?

Trevor Marshall has been invited to lecture at several prestigious medical conferences all over the world,
http://vimeo.com/user450718/videos
I suppose he scared them into that as well?

Nadya Markova Phd (http://nadya.markova.googlepages.com/professional). states in an interview:
I feel that the approach of the Marshall Protocol, which first acts on the immune system and then continues the healing process with an extended etiotropic low-dose antibiotic therapy, is correct. In my opinion, at this stage of our understanding of L-form behavior, minocycline is one of the best antibiotics that is best able to suppress the activity of L-forms.

I suppose marshall scared her too? I'd think this lady know a thing or two about bacteria and antibiotic-resistance as she specialize in the field

you want more scare-examples? Trevor Marshall seems to have the world by the balls with his scare-tactics!

I really do hope you realize the absurdity of you're dogmatic relentless anti-mp attitude, who are you to tell people what is what? you have a husband who is an MD? well gee, I have my own doc, supportive of the mp, are you calling him a heretic?

A few "drop outs" like reenie is only to be expected. Considering the fact that the number of mp-patients is nearing 7000 people, a few drop-outs shouldn't be a surprise.

Looking at reenie's posts on the cpn-forum it doesn't look like she like the CPN-treatment very much either:
http://www.CPn Help.org/lab_tests_good_n ... n#comments
Also, I've been sick for so long now and I'm wondering if maybe none of these so called chronic infections are treatable, the cause or is it something else altogether? Look at the folks that use these treatments for YEARS and don't get any better or get something else and maybe it's a result of messing with nature.


this didn't look too good:
http://www.CPn Help.org/the_post_i_do_not_want__0

I guess you should start scaring people into saying they are better, that would really add some great statistics

you could go on the mp-forum and find posts from discouraged people as well, only the forum isn't intended for whining - it has a setup for how to post progress - or non-progress. If one wants to whine and discuss or fight over other subjects, like CPN or high-dose vitamin D, or steroids one can discuss this at other forums.

The mp forum is exactly that: an mp-forum, if you don't understand the problem of having a loose-chit-chat-arguing-forum about everything else with no order, given the purpose of collecting data, you have to be heavily brain-fogged...

You have "drop outs" from CPN as well, that are now on the mp...

its up to oneself to decide, and random opinion-based smearing with false accusations and lack of understanding wont help that decision. :x
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