Cpnhelp.org

Opps, I didn't spell check it first.  I can't edit, but I have now spell checked it.  Ken

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In pursuit of ABX

Ken, you could try posting the body of it again here as a reply and then you could edit it perhaps.  I am often editing my typos and misspeaks so I suggest giving it a go. 

For me it is coming through with all the Html command characters and it is most difficult for me to read it as is in the initial post.   Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Sound suitably low key Ken, and hopefully will get past their moderators...

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Good luck Ken & kudos for giving this a go.

 

God Bless

r

 

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days

second try 

Antibiotics

A number of antibiotic users have reported reversals of disease progression. A recent supporting article was published in 2007 in the Archives of Neurology. The article titled, “Combination Therapy With Interferon Beta-1a and Doxycycline in Multiple Sclerosis: An Open-Label Trial”, reported overall improvement of EDSSi scores and reductions of contrast–enhancing lesions on MRI. In 2004, American Neurological Association published a letter, "Minocycline Reduces Gadolinium-Enhancing Magnetic Resonance Imaging Lesions in Multiple Sclerosis" which showed improved MRI scans with Minocycline use. In 2007, there was a follow up study with Minocycline titled, “The clinical response to minocycline in multiple sclerosis is accompanied by beneficial immune changes: a pilot study”. This study was published in Multiple Sclerosis and also demonstrated improvement in patient’s taking the antibiotic.

While the idea that Multiple Sclerosis is caused by a virus or bacteria is not new, it is generally not accepted in the field of neurology, which generally favors the autoimmune theory. There are some doctors who are pursuing this line of reasoning and there are several published articles to support the argument that MS may be caused by a bacteria. More specifically, research has implicated chlamydia pneumoniae (CPni), the bacteria that causes pneumonia in the lungs as a strong candidate.

It has been shown in "Chlamydia pneumoniae infection of microglial cells in vitro: a model of microbial infection for neurological disease" that CPn infection is not restricted to the lungs and can enter the CNSi and infect Microglial cells. In 2005, the Journal of Infectious Diseasesi published, “Detection of Chlamydial Bodies and Antigens in the Central Nervous System of Patients with Multiple Sclerosis”, which reported that CNS infection with CPn is more prevalent in patients with MS. In 2006, Trends in Microbiology published, “Multiple sclerosis: an infectious syndrome involving Chlamydophila pneumoniae”. This article (and its references) lays out a strong case for linking CPn infection and MS. This article was co-authored by David Wheldoni who provides additional information on treating CPn infection here.

Since the CPn bacteria can exist within the body in 3 different forms (elementary body, reticulate body and cryptic formi), ABXi protocolsi for MS require the use of several antibiotics taken over an extended period of time. Substantial numbers of users report reductions of disability, improved MRI results and the improvement of other MS symptoms.

Pro: Safe (at least no evidence to the contrary), inexpensive, oral
Con: Secondary porphyriai, side effects typically associated with antibiotics, unproven in MS in any clinical trials -- clinical trials needed
Further Information: See CPnhelp website
Note: My wife has been on this therapy since February 2008. This post is composed of some of the information we reviewed as we made the decision to initiate ABXi treatment for MS.

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In pursuit of ABX

Brilliant, Ken. Gives supportive data and is low key. Thanks.

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Hi Ken, that second attempt looks great from my perspective.  Thanks for reposting it.  I do hope it will make it onto the list that you wrote it for.  Let Us know how it goes.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

When i tried to educate people back 5-6 yersa ago on an msi site they all got mad at me. I think its about not wanting to be stigmatized as having an infectous disease. People with ms and especially  ms with visable disability get so much stigma already, imagine how a person feels when they are not only being stigmatised for being disabled but now having an infectious disease. Some people just wont face that reality because its too hard to swallow. I can understand that, so I guess when delivering your message try to be as sensitive as possible to peopes situations and remember that admiting to being diseased and opening up oneself to the stigma is as hard as being diseased itself

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBSi neutropenia, pus found in facial bone, Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.

I hear you.  That's definitely part of the reasoning.  I also know that boards are very skeptical of "new" people showing up with "enlightnement".

When someone new shows up a TIMS telling eveyone that they ought to be following the Fattigmann diet from Norway - I get extremely skeptical too.  So, I know that I have to make the presentation neutral and in no way dismissive of things others might already feel.

This is a tricky business telling folks it's a bacteria.  I bantered a tiny bit with Sarah before I got on board.   Just a tiny itsy bitsy bit.

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In pursuit of ABX

Um, he's minimizing that banter just a bit, folks.    It got to the point we were all telling him (in ever so nice terms, though) to stop researching for so long, because he was costing Kim her recovery.  Sarah was her usual model of patience and graciousness throughout.

MS101 is a truly remarkable document, though.

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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

I think we get a bit tetchy here when new people come on board trying to "sell" us some new kind of rememdy so your balanced report is much more likely to be accepted and considered.

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Thank you!

Did you read 102?

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In pursuit of ABX

Ken, may I add my affirmation to a well- reported statement, not aggressively said - just the facts - in a low-key way. Well done. Thank you.

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

If I would not be convinced already I would be after reading it. Great job.

 

Daniela

Hi Ken,
Great Job! this is really well done and it should get past moderation it seems.

You work on TIMS is equally well done, you have that knack for being both organized and efficient in your presentation of the material, and yor natural skepticism is actually a benefit in your final assessment and conclusion. To be honest, everyone with MS ought to have that same level of skepticism for ALL treatments offered to them.

marie

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

Ken, Where's 102? I can print it out and read it tonight.

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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

It's at TIMS.  I think I put the link at the end of the 101 post.  The problem with printing them out is you can miss all the links I put in them.

 

Then again, the other problem is they really don't help so much with the bacterial theory since most all that stuff is support for autoimmune theory.

 

But I did spend way more time than you think putting those together.  It's nice that someone finds them interesting. 

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In pursuit of ABX

I'll find it, Ken. As far as the time it took, I'm sure it took a boatload, first to do the research, then to compose a coherent document. Knowing something will be on the internet forever is strong incentive to take the time to 'get it right the first time'. Thanks for being the one to do it.

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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

Understanding MS 101: Doctor Talk and People Talk

Understanding MS 102: My Doctor is Expressing Cytokines: Code Cipher Training

Here are the 2 links.  This is not directly supportive of ABXi and was written in my "before I knew anything about abxi" period.  However, it is useful if you want to understand what the rest of the world thinks about MS.  It will give you a good idea of that your disbelieving neurologist believes.

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In pursuit of ABX

Ken, Thank you for sharing this information with us here at CPnHelp.org.  I have begun to read it and can say that personally I have been reading medical speak since the age of 18.  It is truely a language and you are doing justice to decoding it for intelligent seekers of knowledge.   

I must say I always have ideas.  Many for other folks as well as for myself. Some of you hear may have noticed and found it helpful or not.  Anyway, with the envent of the internet and computers anyone can publish.  I purchased a booklet about a year ago. I going to research it right now and hope to add the links to get you to the publish on demand publisher.  So amazing.  The author of the book "The Remedy; Integrating Acupunctue into American Health Care." by Lisa Rohleder, L.Ac. is an expansion of a self published booklet that she wrote to bring forward the concept of affordable Acupuncture for the working class individual.  When I get myself sorted out I am just about set up to get started providing this in my community.

But back to the concept that I am sharing with you, in hopes that you can reach a larger audience for the MSi community (of which I am seemingly not a part).  Your journey with Kim is something that you will continue to document and that to would certainly be worth a read etc, etc, etc.  

Here is the link to lulu.com enter through the book that brought this service to mind.

They print to order in hardcopy and downloadable formats.   Lisa's book is 6 x 9" about 100 pages with references and 1.5 line spacing.  In her intro she states that it is a very small book about some very large issues.  My thought is that you may have something similar at some time or other.

Blessings to you and Kim,

Louise

 

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Louise,

I am humbled by your suggestion.  Thank you.  I'm not sure than I'm up for this sort of thing, but one never knows.  The costs actually look pretty expensive.  The organization I work for publishes books and I think it's a lot less, but then again, this Lulu thing seems to wrap up all the costs into one all inclusive price.  More things to ponder.......

Ken

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In pursuit of ABX

Ken, Glad you took a look it is another way of doing a book or booklet.

Looking forward to more of your posts.   Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

clammed, ppl don't want to be associated with infectious disease, but if you are ever trying to get disability insurance on a mortgage or the like, they group MSi with AIDS so ppl should get mad about that! I always feel offended that they group it with fatal auto immunei disease. It doesn't much bug me that I might have an infectious disease because my understanding is, most people end up with the presence of CPNi in the body by late adulthood. It's not like you are singled out as a mysterious carrier of the bacteria.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month