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Nelly
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PostPosted: Thu Feb 02, 2006 5:16 am 
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Location: Paris, France
Quote:
[/b]"I forgot to report in my previous posts that a rash has developed behind my left leg, right in the middle of my knee and hip three months ago.I googled Erythema Migrans rash pictures and found it similar to mine.
I had a lyme test back in 1993 which was negative.I thought i didnt have lyme bacteria since then, but this rash stays there for three months which gets smaller one day bigger and painfull the next day, indicates that i have lyme bacteria too."


Guner,

I rarely read the forum so I missed this post of yours a few months ago. I am sorry that I did because it is absolutely FASCINATING that after a few months on abx an EM-type rash has appeared on your leg.

You might remember that I have posted a couple of times here re the possibility of Borrelia burgdorferi being involved in the aetiology of MS (or what is diagnosed as being MS ie an autoimmune condition).

Had I seen your post I would've said: TAKE A PHOTO, in fact TAKE MANY PHOTOS of the rash as it is growing, changing appearance, etc.

Many people with Lyme get these secondary EM rashes when on abx treatment, and many, many people with long term Lyme have negative serologies, that's why so many have these non-aetiologic diagnoses (diagnoses like MS, like CFS/ME, like Lupus, like other so-called auto-immune syndromes) which are merely descriptive of an intermediate process not a CAUSE.

I have no problems with Cpn being identified as one of the possible pathogens involved in MS but I am quite convinced it is not the ONLY one. Just like I am convinced that people with very serious neurolyme also have several other pathogens (probably Cpn being one of them) which are either central or peripheral in the aetiology of their illness.

Guner, very, very pleased you are improving on your treatment, and I agree with you, I understand why so many people give up on abx treatment, as abx can be hard to do when you have one of these persisting bacterial infections. The die-off can be atrocious and you have to be a true beliver to keep going.

Nelly (in France-neuroLyme for 20+ years)
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yguner
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PostPosted: Fri Feb 03, 2006 4:13 am 
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Hi Nelly,

I didn't know many people with Lyme get these secondary EM rashes when on abx treatment.I agree with you on being infected with several pathogens ,i am glad the abx treatment works for both cpn and lyme.And the EM rash i had behind my leg is still there but not as big as before.I will take a photo of it when it gets bigger again and upload in image section on Cpn.org site.Good luck with your treatment and keep us posted.

Guner

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On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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Anecdote
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PostPosted: Sat Feb 04, 2006 1:25 pm 
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I would hope that it doesn't get bigger again, but if it does, http://www.CPn Help.org seems to be doing a nice line in photos at the moment!

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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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yguner
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PostPosted: Sun Apr 09, 2006 8:12 am 
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Hi all,

I just completed my last flagyl pulse yesterday without a reaction,the only difference i felt with this pulse was an increased pain around my lover back. It has been a long journey for me since i started the cap's protocol and i experienced a lot of strange reactions which made me understand that cpn infection is really hard to eradicate and some complications can occur while taking abx.such as yeast overgrowth.The reason i am saying this is because i took an antifungal lamisil 250mg.tablet right before my last flagyl pulse for 8 days and the rash i had behind my leg dissapeared which was a big relief for me.But after i stopped taking lamisil antifungal tablet i started to pulse flagyl for 5 days and another new rash developed behind my shoulder which became painfull yesterday.Now i am thinking to start taking lamisil tablets again until my next flagyl pulse.

I completed 22 months on abx.protocol and i still feel the infection in my spinal cord mostly in the lower part .It feels like the upper part of my spinal cord is cleared from the infection because i dont have any pain or activity in upper part like i used to have.As you know i have PPMS which gets worse day by day but my sickness didnt get any worse since i started the abx protocol.I think when my lower back pain vanishes i will start having more improvements.It is just like melting an iceberg with a cigarette lighter

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On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)


Last edited by yguner on Sun Apr 09, 2006 8:51 am, edited 1 time in total.

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Anecdote
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PostPosted: Sun Apr 09, 2006 8:41 am 
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Hah, you beat me to it! I just posted this on CPn Help:

"Melting an iceberg with a cigarette lighter." That is just the best remark! You are so patient and brave and determined that I hope everyone newer to the site reads all your blogs, not only to see what some people have to go through but also to realise that this isn't just a quick fix for anyone.

Sarah :)

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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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Katman
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PostPosted: Sun Apr 09, 2006 12:30 pm 
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Guner,

You are at the top of my hero list.

Rica

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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.
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MacKintosh
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PostPosted: Sun Apr 09, 2006 9:40 pm 
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Guner - You are the reason I think I will keep taking abx past the year suggested. Between you continuing to have new sensation and improvement, Rica showing vast improvement still, long past the year mark, and Jim losing the pain in his neck and shoulders only this week, I think I must keep on for quite awhile. Thanks to you pioneers, the rest of us (one year later) have it much easier. Hopefully, thanks to all of us, the world in general will have it much easier down the road.

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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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yguner
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PostPosted: Mon Apr 10, 2006 2:43 am 
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:lol: 8O :P :D

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On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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Anecdote
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PostPosted: Mon Apr 10, 2006 3:49 am 
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Its starting to melt! 8O

Image

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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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jimmylegs
 Post subject: but why?
PostPosted: Mon Apr 10, 2006 7:22 am 
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but is it the lighter or global warming!?! :wink:
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MacKintosh
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PostPosted: Mon Apr 10, 2006 8:32 am 
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In this particular case, I'd have to say it's the lighter.

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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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wiggy
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PostPosted: Mon Apr 10, 2006 10:06 am 
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Guner,

I read your story and I do not know what to say except it is great you will keep going. It amazes me that you feel the infection clearing your spine.

I called a friend of mine that is in a wheelchair with MS today, she lives in Iowa, I am not sure if she has a computer right now (her kids moved and may have taken it with them) but will mail your story to her if she can't read about it online. I want her to try the abx protocol too. I am just starting the program. I am on doxy and will start zithromax this month.
I dread flagyl and hope I have your strength - I had this for 10+ , mostly brain but have at least 4 spots on my spine.

Best of Luck as you continue
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yguner
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PostPosted: Wed Apr 12, 2006 1:24 am 
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Hi Wiggy,

I highly recommend you and your friend to start the abx protocol,it is a long treatment but effective on stopping the progression from the month you start.And i believe we will have better outcomes in the near future.
I am wishing you good luck with the treatment.

Guner

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On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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yguner
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PostPosted: Wed Jun 07, 2006 2:41 am 
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Hi all;


Finally I completed two years of CAP treatment. I still have the severe pain in my lower part of spinal cord. Sometimes the pain turns into a numbness which feels like a solid rock and sometimes turns into a tingling feeling which becomes hot and burning feeling in the end that I was experiencing for the last 5 months. I don't have any pain at my legs,joints or feet.
I feel achy in my lower ribs but this doesn't happen so often. Progression of my MS has stopped since the time i started. Couple days ago, a friend of mine came to visit me whom i didn't see for the last two years and he said i am exactly the same as the last time he saw me. I heard this from some other people as well. I feel also the same and my abilities are the same as the time i started. I have spasms as well. But during the flaggy pulse periods, the spasm gets worse and the activity in my spinal cord becomes more noticable.
I also use Lamisil 250 mg for fungi and yeast treatment for the last two months, it has helped me a lot with my rash on my leg.
Overall, my two years observation on myself would be I benefited from the Cap treatment and still am. And I am thinking of staying with the Cap treatment for one more year.

Best Of Luck to you all...

Guner

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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Anecdote
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PostPosted: Wed Jun 07, 2006 4:27 am 
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Guner, one thing: in that more recent photo of you, you look a damned site more healthy than the previous one. Did your friend notice that?

Also, what will you do in a year's time: I have now been on intermittent treatment, two weeks every two months for more than a year and a half now, and was supposed to be gradually extending this period, but I just find I am too damned scared to do so at the moment, not because I feel myself getting worse again between abx periods, but just because I think, after leaving it a week or two longer, that I am tempting providence.

Best of luck to you as 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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