This Is MS Multiple Sclerosis Community: Knowledge & Support

I can't believe it's been 3 months (I'm tacking this on tonight 12/5/07) and we're on the eve of the day Kim will get her very first script for abx. It's been a long road; just getting to the starting line.

If you're interested in maybe understanding more about abx and you don't know where to start, begin here. You might also want to see Kim's Blog. This thread details my discernment on abx. It's a lot of reading, but the folks who have helped me in this thread are experienced, helpful and part of a family.

We are serious. Very serious about this treatment. The folks who are here, who have guided us are very serious about this, it's not just something to try. This is something to live. This is better than finding pirates gold in your front yard. It's not easy and it requires a lot of will power just to get started. But we believe, we persist and we will cure Kim's MS and along the way we will work to help others learn that MS is not an incurable illness. Peace, Ken


Before I really start this post, I want to be clear about who I am and what my motivation is. Some of you have read my posts over the last year or so and I also know that I’ve not been the most “regular” TIMS member, but I’m not a newbie.

Who I am

My name is Ken. I don’t have MS. My wife is Kim, she does have MS. As best as I can, I accept MS as “our” MS and though I don’t have to directly experience this illness, I do my damned best to feel it and make it ours. I genuinely believe that together Kim and I can beat MS. This all might seem to be more properly posted in the “introductions” forum, but when I get to the real purpose of this post, it will make sense why I put it here.

I am not a medical expert and I’ve noted this in my 101 and 102 posts. I’ve done my best to learn about MS and try to take my understanding to a higher level and to share what knowledge I have gathered with others, hence the 101 and 102 post. While these posts take a definite autoimmune slant, this is all that there has been to know and I’ve done the best I can to understand these things. I am definitely open to other ideas.

My Motivation

I don’t post stuff to try to be smart; I am not angry or bitter and looking for a fight. I’m here to do the best I can to learn about and give Kim the best help I can provide. I have been called an “accountant”. I am an accountant. I’m a CPA and I work for a small non-profit organization that is trying to make the world a safer place by spreading the concept of community policing. I’ve been trained as an auditor and like any medical researcher, I ask questions and skepticism is a natural way to think – I prefer to know and see that the answer works a few times before I accept it and I like to know that the answer is consistent with other known answers. I am also coming to realize that I can never have perfect knowledge, but one wants to be extra careful when dealing with the health of your greatest love. I find this effort extremely humbling, I don’t ask questions to be a smart ass; I ask questions to more fully understand what I cannot fully comprehend. I am doing the best I can for Kim. I am deeply sorry if I have offended anyone at TIMS.

Why Am I Posting This Today

Kim’s just now recovering from her 5th Novantrone infusion. The doctor who has been conducting this is a Hematology Oncologist, which means he isn’t Kim’s Neurologist and might be open to the idea of talking with me about Doxycycline and Azithromycin. There is a small window of time over the next 3 weeks when Kim will be seeing the Oncologist and if I spend the next 3 weeks reading, we might miss an opportunity. I have read a lot of stuff about the ABX treatment and there is a lot more I have not gotten to. I feel as if I’m in a race to understand, and this post represents a request, if for nothing else to be pointed in the most current/right direction.

A brief personal experience. I’ve had a bad back since I was a kid. My mother had me doing the heavy lifting in her business and ultimately years of abuse led to serious disk issues. I’ve been to the Ortho and done the exercises and the physical therapy and then gotten re-injured and started the cycle again. Then I’ve spent years in chiropractic and ultimately found it made me worse. Then I returned to the cycle with the ortho. Along the way I had to give up most of my sports, often having one or more disk slips in any given year. I gave up golf. While this might parallel some of the experience of having MS, I eventually found my self defiantly telling the ortho I was done with physical therapy and done with the custom made back brace and that I was sick of this slip disk issue and I wanted another way. OMG! He very apprehensively said the lifelong missing magic words …… “well you could see a neuro surgeon for an opinion.” I had waited 20 years to hear that - there was yet a 3rd discipline that could help that I had never heard of! The neuro surgeon said I was an ideal candidate and I had a lamonectomy-distectomy and I can play golf now. My point is, there was a non conventional answer and I needed to push to make it happen. I did a lot of homework and I found the very most trusted surgeon in the city. This is my analogy. Kim hates this MS thing like everyone else here, but we’re ready to add something new. Since the surgery my best is a 79 I shot several years ago. I believe I can get Kim on the golf course one day.

What I have Read

I have completely read the NAC post at www.davidwheldon.co.uk/NAC.html
I have completely read the thread on “David Perlmutter’s “Letter to Doctors and Patients”
I have completely read the thread on “MS/Infection”
I have completely read the thread on”Long-term(?) abx Treatment with Roxithromycin for MS”
I have completely read the thread on “Are any neurologists taking notice?”
I have completely read the thread on “Chlamydia pneumoniae links”
I have completely read from www.davidwheldon.co.uk website the entire webpages on:
Ms-treatment1
Ms-cpn-qa.html
Hhv6.html
Chl_vasc.html
Supplement_rationale.html
Peer-review.html
Vit_D.html
I have also completely read the home page for CPn Help

The complexity and confusion I’m experiencing is that there is a lot more, and it only multiplies when I start following links. I also have a complete copy of the CPN handbook that’s 67 pages long and I’ve only made it to page 3.

I completely respect this concept otherwise I’d not be putting this kind of energy into it. It's just that I’m not a doctor, and I can’t just learn all this immediately and I can’t find a clear and organized way to review the info. But, I’m trying and I won’t give up.

Questions At My Current Milestone – I Know I Have Further To Travel

Based on what I have read here’s where my understanding draws a blank:

1) Kim’s been taking 4800 NAC’s daily for about a year. We don’t remember if she experienced the flu-like symptoms when she started and she clearly doesn’t have them now. Does this get in the way to thinking that the ABX treatment will work since some posts imply that the flu-like symptom means that the treatment is working?

2) Kim’s neurologist is very conservative. For example, he won’t give any opinion on supplements, saying “they neither benefit nor harm” from the MS perspective. We disagree as can be clearly seen from our experience with Ascorbic Acid. However, we don’t discount the value of the long-term relationship with our neurologist and we don’t want to burn that bridge as a cost of trying something new. We’re now on Copaxone and just now working through our 5th Novantrone infusion.

a) Can these therapies be continued with Copaxone and Novantrone? I have read that Loriyas was using Copaxone and ABX at the same time.

b) We are certain that our neurologist will not help us with ABX. Do we have to tell him? Like I said we have a long history with him and don’t want to burn the bridge. Is the Hematology Oncologist likely to take an interest in ABX, or is his relationship with our referring neurologist likely to mean he’s going to “punt”. Is it best to take this to an internist or an immunologist?

c) None of what I have read describes the test for CPN. I have read the words “Lumbar Puncture” which honestly sends chills down my spine. Who do we call? Is it painful? I’ll drive to Tennessee if I have to, but is this the only way to get the best and most sensitive test done and does the amount of NAC we’ve been taking negate this effort?

I have a bunch of other questions but they are more curiosity and I don’t want to be annoying. I’ve narrowed down my inquiry to the very most basic issue. How do we get tested without ruining our existing medical relationships or discontinuing existing treatments?

Other Disclosure

I’m also interested in Tovaxin. If the concept of persistent Chlamydophila pneumoniae is the cause and perpetuating agent, I realize that Tovaxin is only another way to deal with the effect, albeit a seemingly pretty effective way. I’m fine with that. May I have cofee with my mikshake?

napay, now signing as Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Dear Ken,

feel free to ask any question that is on your mind, they are welcome .

1) From my personal experience, I did not feel anything while only taking the NAC. But when I started to add the ABX and then later when I had my first pulse therapy I clearly noticed these symptoms. I also read about similar experiences in the posts of other ABX users, so I would not be concerned about that point.


2) I had the same issue with my neuro. He is an important person for me and I didnt want to upset him. I decided to tell him about what I intended to do (stop Tysabri and Start ABX/LDN) and that I want to go this way together with him. He was not happy about my decision and refused to prescribe the ABX, but he accepted it and agreed to watch me on my experiment.

a) I dont know about that.

b) My GP was very open minded about alternative aproaches. My major point for trying the ABX was:

1. The standard therapy (eg Copaxone I took before Tysabri) do only have a minor effect on dissease progression.

2. Why not give an alternative protocol a try, that if it works would at least give a chance for a halt in progression.
It takes "just" a year. My MS does not progress too fast so hopefully even a year of ineffective therapy would not be too harmful.

3. In current trials minocycline (2x100mg) looks promising as a potential MS treatment (maybe because of neuroprotective and antiinflamatory effects). So even if there was nothing about the CPn theory I would not be completly without protection.

c) I did not do any test for CPn because:
1. The test results are not reliable.
2. I had a lumbar pucture twice and it was really really bad for me. Lots of pain on my lower back for about a month and a serious headache for the first three days. I personally know others who did not have any problems after LPs. But I would only do it again if it was REALLY!!! important.

In the ABX forum some people (including myself) have a diary of their experiences while on ABX treatment, this might also be an interesting source for you to read through.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

Hello Ken, of course you may have coffee with your milkshake if that is your preference I think I said that you sounded just like an accountant, didn't I? Well, from what you say, you are the best sort of accountant.

1) I had no reaction to NAC other than a runny nose for a few days.

2a) Yes, many people take copaxone with abx and I would think that to take them when someone is on Novantrone is a good thing.

b) No. But who you go to, I don't know: things are different in the UK, but could you get Kim's GP to prescribe? Many do.

c) I wasn't tested for CPN before the event. A month later when my antibodies might have been expected to be higher, they were minimal. (The Vanderbilt lab had to close temporarily due to lack of funds, so doesn't really fall into your timescale.)

The CPn Help handbook is now very large and much of it not particularly relevant for MS. David's site is probably the best introduction as the handbook says. His pdf is very good to print out and show to your chosen physician but I could also send you two papers if I had your email. You can find mine at the bottom of any of my posts.

My Disclosure

I'm married to David Wheldon and I don't have a good relationship with my neurologist, but then, I don't really need him anymore.

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.

Double post, sorry

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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.

Hi Ken,

I am a caregiver too. Kim is very lucky to have such a fellow as you, your carng for her comes shining through with each word.

Others will (and did) answer your questions much better than I. I'll just address a couple points.

About your neuro. I admit we are absolutely horrible and lie, lie, lie to my husband's neuro. We have our reasons and you might have yours. Of course, I am not recommending people lie to their health care providers, but MS is war and in wartime we do what we have to do. I would never sacrifice a possible opportunity for improvement in order to keep a relationship with a doc. Either lie, or find a neuro who you can be honest with-that is my down and dirty suggestion.

A little story: My husband had his last neuro appt. in June. He MUST go to a neuro twice a year and be MRI'd once per year for his employment to include a status report from the treating neuro. This is not negotiable and is directed by higher powers.....

Well, he has been feeling pretty great and had an MRI that was improved over his last one to prove it. His neuro believes he is on Avonex (which he stayed on about a month into abx, by the way) and when the neuro pronounced at the appt in June, "You're getting better Jim, we don't know what to do with you." I almost fell off my chair............we aren't "good" liars to begin with but this was almost too much. Than my usually very honest husband chimes up with, "It must be the Avonex working." That was just about more than I could take. Finally, the neuro decided that it must be, in fact, the Avonex but it was also that Jim "wants" to do well----you know the doc implied, Jim is willing himself to improvement. I am not a drinker, but after that appt. I could have used a belt of something strong.

My point here is lie if you must to keep the relationship, but find a knowledgable doctor willing to use abx that you don't lie to so you have one physician you can rely on to be a saftey net for your wife.

We began this process through self- treatment and although I have no regrets, I do admit it gives me peace of mind to have a knowledgable doctor who now treats Jim with abx. I never felt qualified to be his doc, but did fill the role for nine months.

Hi Ken,
I'm a carer for my daughter, and we have the same problems with her Neurologist. We no longer tell the neurologist about the CAP, we are lucky to be under the care of David Wheldon, so have no need to consult our doctor.
Ella and I talked about whether she should talk to her doctor about the CAP, but she explained to me that although she felt she could talk to him about it, she did not have the energy to explain the treatment to him and felt that even if she did she would be put under scrutiny which would feel rather uncomfortable.
I must admit it would feel great to have the wholehearted support of a local doctor, to reassure us when things are difficult, but even if we had a local doctor (Dr Wheldon is four hours drive away) I doubt s/he would be in a position to offer reassurance, as most doctors are unfamiliar with the process the patient goes through when following a CAP.
Michele

Ken, your story and attitude are such that will win this challenge, I think. My name is Rica - aka Katman. If you are looking for others who have done antibiotics, in desperation (like mine) or other reason, you are meeting them. We are now many - beginning with Sarah and David, then Lexy and Jim, Joyce and Steve, Michele and Ella (soon to be known as "flygirl"), LifeontheIce, MacKintosh, and the list continues. I know that I have left some people out. Today I wrote what is becoming an annual event for me - a later chapter in my own story under "My Adventures in MS". It would take a large volume to describe my improvements over the past 3 years. They are many. Like your very lucky Kim, I have had a caring spouse and friend to help me all this time - I should be dead or in a wheelchair. Please join us.

I see that I also need to update my signature!

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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.

You break my heart! It was so much easier for ME to make decisions about MY treatment than to hope to heaven I was making the right decisions for someone else! I have to commend you.

That being said, my dad was a CPA, so I picked up a lot of the detail oriented personality 'disorder'. When I got the 'probable MS' diagnosis, I panicked totally. Because I couldn't work (optic neuritis, with loss of seventy percent of the vision in one eye, which came back over seven weeks' time), I researched. For eight and twelve hours a day, over many weeks, I researched.

Basically, I found the science of cpn infection and the logic of the manner in which it could be killed, to be quite sound. I did such a thorough background check on David Wheldon, it was a masterpiece. (When I first read Sarah's story, it was in an article, and I notoriously distrust newspapers...) I dissected the Vanderbilt work up, down, backwards and forwards.

I was directed by a newly minted neuro fifteen years my junior to take Copaxone immediately and he pointed to a study showing less decline than other MS meds as his basis for the demand. On reading the Copaxone literature, I realized it was major drug with major ramifications and no one knew for sure the mechanics of how it 'helped' with MS or what caused MS. I wasn't willing to poison my body or believe it had suddenly switched on somewhere and was now chewing on its own myelin just for sport.

A bacterial infection, such as h.pylori with stomach ulcers, made so much more sense to me. A simple, almost harmless fix, like antibiotics, which can be taken while taking other meds or treatment, also appealed to me. Harmless drugs, tried and tested. And, like those before me and now many, many behind me, I had tangible improvement in less than two weeks! You could say the leap of faith I'd had was borne out, but I must tell you that leap of faith was based in sound research and simple medical realities. If it can't hurt you and might help you, where is the dilemma? I wouldn't wait so long to be sure that you allow this damnable bacteria to do more permanent damage to someone you love. (And I must say, I was so taken with your comment on her being the love of your life. We ladies love a loving husband!)

An aside. I have kept my diagnosis and treatment a close-held secret amongst eleven people. Not even my family knows, for reasons i won't go into here. Last night, I told someone because I'd felt guilty not telling him as time went on, and I've realized I can help a lot of people by telling, much as Sarah realized years ago. Well, had I not told him, his aunt (diagnosed with MS a year ago) would not be headed for the doctor's office today to pursue abx therapy! So, in a way, I've been withholding a viable option from people who need it simply by not telling. That will have to change soon.

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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

Hi Ken,

Like you I am a caregiver. I may be able to provide you with some unique information as my husband has had 5 infusions of Novantrone in the past 9 months. Re your questions:

1) It's not critical that Kim respond or not respond to the NAC although a response is probably a good sign but lack of response isn't a deal breaker by any shot.

2) Understand about the Neuro bridge. We discussed antibiotics with our Neuro and since I am by profession in Immunology it was a little like a chess match. He's open to Minocycline (it seems this isn't considered heresy among Neuro's these days due to it's reasonably well proven immunomodulatory effect). Regarding the rest of the CAP therapy, he was so resistant that we decided to drop it and get the antibiotic treatment elsewhere. He kept citing all the patients asking him about Marshall therapy and knocking it because Marshall is an engineer not a doctor.

Only you can really intuit your relationship with this doctor and whether or not he will "fire" your wife as a patient if you pursue experimental CAP therapy. Most of the big MS neuro's participate in clinical trials. I will bloody well guarantee you if any of the big pharma companies offered these MS neuros an antibiotic trial with decent study fees they would be all over it. Since most antibiotics are already off patent or about to go off patent and very few still in development since they are low profit products for most pharma companies this is unlikely.

a) Novantrone. If Kim develops an infection while on Novantrone or even a fever over 99/100 degrees, your Neuro has likely instructed you to call so they can prescribe you 7 to 10 days of a broadspectrum antibiotic (usually Levaquin) as prophylaxis against bacterial infection. They would even prescribe it longer if necessary.

Based on all research I have done there is no drug/drug interaction between Novantrone and any of the antibiotics used in CAP. As you are probably aware Novantrone is actually in an odd class of antibiotics itself. Many chemos are. There are others over at CPn Help who have or are currently taking Copaxone with CAP.
Probably the only thing to think about is that in the Novantrone neutropenic window (day 9 to day 13 post infusion) being on the antibiotics can further lower WBC's but again - if Kim has a fever while on Novantrone they will still likely prescribe her the broadspectrum indicating that Neuro's aren't too worried about this. My husband has been on antibiotics during his last two infusions and it has been without problems. N in this study = 1.

b) The Hem/Onc is unlikely to go for the antibiotics although I could be surprised. They are seeing quiet a bit in their med journals these days about pathogens being involved in various blood dyscrasias and cancers.

Your best bet is probably a Family Pract. Most prescribe antibiotics every day and view them as reasonable and relatively low risk. The easiest reference point to use with a doctor in discussing the need for multiple antibiotics and length of treatment is the case of tuberculosis (TB) as it requires lengthy treatment and multiple anti-infectives.

c) Testing for CPN and many other pathogens is fraught with many technical lab accuracy issues. Accuracy of cell wall deficient pathogen/multi life cycle pathogen testing as reflected by Specificity (% false positives) is good (95% plus range), ie if the test is positive congrats you have it.

On the other hand - Testing Sensitivity (% false negatives) is usually very low. Often as much accuracy as only 30 to 40% meaning that testing for these pathogens usually misses as many as 60 to 70% of the pathogens for which the lab is testing.

Many people taking CAP therapy test negative for pathogens at the begining of what then becomes purely empiric therapy and then later as therapy works, antigen antibody complexes become ample in blood serum then those same previously "negative" patients go on to test positive, even highly positive. I probably spent too much time trying to prove a pathogen via labs and wish my husband had just moved on to empiric CAP treatment.

On a happy note - my husband had an echo today and his LVEF was 67. Whew... I believe you will understand that one.

Hope this helps.

Hi Ken, I had a very mild reaction to NAC when I first started, a bit of sneezing that I put down to hay fever. However recently I increased the dose to 1200mg and for three days I was sneezing, my ears were bunged up and I had a scratchy throat, and felt quite unwell. I'm not sure why this should be but I do remember feeling disappointed that I should have had so little reaction to it in the first place and now realise what kind of reaction other people get to it.
Could it be that when someone is very ill there are so many symptoms that it is difficult to notice new ones or at least to put them down to anything in particular.
It is quite common for people to have no noticeable reactions to it.
Michele

Frank, Anecdote, Sojourner, Dovechick, Katman, MacKintosh and Daisy,

Thank you so very much for your replies. I had hoped to read and address them earlier this week, but I got very behind at work and Kim is recovering from her fifth Novantrone infusion. I also spent a lot of time on posting my current “discovery” regarding Copaxone. I want to reply to each of you; I value your time and thoughtfulness in helping us with the discernment we are undertaking.

Replies

Frank, I get the impression that reaction to NAC is not really the important issue here. This is good to know. In case anyone was wondering, I arrived at the 4800/day dosage from a trial that was completed, though not yet reported on. The trial was in combination with Copaxone and the high dosage was found to be safe. I’ve called the doctor in Canada to ask about this sans abstract. We very much respect Kim’s neurologist here in Northern Virginia and we very much value all of his past, present and future efforts. I’m certain that it’s tough for a doctor to come to understand that we’re now going to question his best judgment, but all disciplines have limitations and we respectfully desire to be inclusive of other disciplines. We greatly desire to continue our relationship with our neurologist. TWO lumbar punctures, ouch, and double ouch. We really want to avoid this; you are very brave and/or determined. More thinking on this below when I get to discernment.

Anecdote, I want you to know that I think your chosen name of “Anecdote” is so very appropriate and I find a soft artistic humor in it. I have been thinking this through with Kim and we agree that the Hematologist Oncologist is not a good idea. We have a plan A and B that I will describe below. We are so very thankful that you are here doing this and it is my goal to get as much of our thinking process as possible on this thread so someone can follow in our footsteps if desired. I absolutely want to see the two papers you offer to share. I will also detail below my efforts to assemble a notebook that we will present to prospective doctors. BTW, I’ve read your “story” on the cpninfo site and as a former art major, I’m really impressed with your work. It’s fabulous that you can paint again.

Sojourner, Thank you for your compliment. Kim is so very appreciative of all the stuff I do, I don’t see it as effort or work, its all part of a burning desire to make it all better. Lying, wow that was just so very brutally honest and appreciated. Kim’s been with the same neurologist for a very long time and the Provigil has been a fabulous help to her. If you are still on Avonex, here’s a link to some Avonex tips we accumulated a few years ago before Kim got on Copaxone.

Dovechick, Thank you for your thoughts on NAC. You are fortunate to be so near to Dr. Wheldon’s office. I definitely want to call him and hope that it won’t be a terrible imposition to have a moment of his time. I also want to call Dr. Sriram and Dr, Stratton.

Katman, Thank you for your encouragement. I believe we are on the way. I have pages of printed up threads on which you have posted, highlighted, underlined and circled. My favorite Katman quote is, “Something I still can’t do is levitate”.

MacKintosh, If you are still taking Copaxone, please click on “Copaxone Sting Reduction Technique”. I admire your checking and double checking as any “certified pain-in-the ass” would. I’m already starting to feel the need to keep this a secret and we haven’t even gotten started yet.

Daisy, Yup we have a bottle of Levaquin downstairs. It’s very reassuring to read your post. LVEF 67, that’s fantastic. I have a lot of questions that I hope you will reply too. Thank you for your insight, it’s greatly appreciated. Your post helped me know that we can have coffee with our milkshake.

Discernment

As noted we want to keep our coffee and now have milkshake with it. It’s comforting to know that Daisy is doing this. It would be way harder to think about this if we had to choose one.

If I may put on my CPA skeptic hat for a minute, it’s hard to go against the tide. I imagine myself in our neurologist’s office defending this course of action (don’t actually plan to do this). One taken based on articles we have read on the internet and web postings from folks we don’t know. I don’t completely understand the articles and most all of it isn’t taken from medical journals. I am not a doctor and I’m not in a position to assess the credentials or medical conditions of anyone here. I hope MacKintosh understands this, as an accountant it’s part of the “disorder” I have. So herein is the lowest point on this path of acceptance, these kinds of thoughts have to be considered in this discernment.

On the flipside, I can alleviate some of this with the continued accumulation of knowledge, which is something I will write about in the next section of this post. I have read David’s site and printed up most every abstract I could find and will read those too. I will also discuss these materials with Kim’s brother-in-law who is an experienced pharmacist. Actually, more than discuss, he’s going to get a notebook from me with a set of concise and important questions. We will also pursue a family friend who is an emergency room physician. There is also the cost benefit argument, which I think bodes well for antibiotics, these drugs are agreeably safer than the Novantrone Kim is on now. They are not expensive and we have good health insurance.

So here is my one single question in this discernment that I can’t quite grasp and I’m hoping you might help me comprehend:

How do we logically follow from CPn infecting our cells, to the outcome? Meaning, how does CPn infection eventually bring about the symptoms of MS?

The CPn handbook has a section titled “Multiple Sclerosis and the CPn Model”. In the forth paragraph I read the following, “… if a nerve has died from some other cause.” The implication (as I read it) is that something that is not CPn caused the nerve to die and the clean up process that follows causes WBC’s (also not the cause) to be around for the clean up, thus getting implicated. I also recall that the handbook says something about the infected cells becoming useless in their intended function, instead now becoming nothing more than a home for the CPn. This implies that WBC’s with CPn are not being implicated as the cause of myelin destruction. So in another way of asking, in the CPn model, what is causing myelin damage that isn’t happening in non-MS’ers? And how does the elimination of CPn, bring about reduction of myelin damage?

I don’t want anyone to call me a naysayer. I’m not. This is exactly the question I think I need to explain to the doctors I’m going to ask for help. I figure I get one shot per doctor and I’d like to know what I’m talking about when I get there. I may have missed this in the handbook, I’m not perfect. I’m not looking for anything tangentially related and I completely understand that CPn is bad stuff and we’d want to get rid of it anyway. I understand that it takes over cells and it’s hard to detect. But, these things don’t seem to explain how myelin gets destroyed in folks with MS and not in folks who don’t. Please help me make sense of this one question.

I also want to add that I’m drawn to this because of the sincerity of everyone here. I realize that is contrary to what I’ve skeptically stated above, but we’ve honestly found a simple way to help the Copaxone sting and that’s not so publicized either. David is clearly a real doctor and scholar who is in every sense a published professional. Clearly others involved in the CPn work are too. No one is selling supplements or miracles and no one has a slick website to join that has nice glossy photos of doctors in lab coats. Like I’ve described in my first post, all you need to do sometimes is find the right person to ask

The Notebook

Two years ago MacKintosh recommended a set of documents to take to the doctor’s office and the CPn handbook has a very nice section on what to bring to your doctor to educate about CPn and the protocols. I want to spare Kim the lumbar puncture and I’m going to list out for everyone here the stuff I put in the notebook. Plan A is to take this notebook to Kim’s brother-in-law who is a pharmacist and to a doctor who is a family friend. I want to make this as convincing as possible and I will lay out the books outline here in a post so others may benefit from this effort. I’m also becoming aware of the fact that there are different treatment protocols. How do I sort through these, or should I present the top 3 to our family friend who is a doctor?

Thank you all, I’m planning to be here for a good while. Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken, I'm going to limit my reply to your reference to the Cpn handbook and the implications of that reference. The extract that you mention comes from this quote:

"How can the immune system have caused the injury if the injury occurs before it arrived? If we understand that immunity includes cleaning up dead cells and unwanted tissue, we see there is a very good reason for the immune system to be present in the brain if a nerve has died from some other cause."
Marie is explaining how the model of the immune system attacking the body is illogical, because in the studies made, the injury she refers to (which could have been caused by Cpn or some other pathogen) was present even before the WBC had arrived at the location of the injury. This implies that something else caused the damage not the immune system.
One possible reason some people might be susceptible to MS symptoms as a result of an infection is that their genetic make up could be at fault. There is a lot of evidence the suggest that genetics are implicated in MS susceptibility. Why else would the highest density of MS sufferers in the world be in Scotland, no one is implying that auto-immunity is catching...
Recently scientists have discovered two genes that might be responsible for a breakdown in the immune system process.
Link: http://news.bbc.co.uk/1/hi/health/6919613.stm
There is also some speculation about the permeability of the Blood Brain Barrier in MSers.
The difference between me and my daughter is that her Cpn infection is most damagingly located on her CNS, whereas mine seems to be located in my skin and mucous membranes. People like me have lived with a number of unexplained and distressing symptoms for more that 40 years. The difference in peoples symptoms is what gets labelled as MS, CFS, Asthma or sinusitis...
Michele

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Ken, I, like you, am short of time right now, so please forgive me if I missed something - which I probably did. If you have already begun the supplements, stop reading. If not, that is the first step. They are ALL good for Kim and will help her body (and yours, most likely). I probably also missed that you suspect that you are positive, too.

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.

Ken, The myelin sheath is damaged as a result of the infection, rather than the destruction of the myelin sheath being the CAUSE of anything but collateral damage. I know there was a nice, concise, simple and wonderfully UNDERSTANDABLE explanation of this in the past month or so on cpn help, but it may take me a day or two to find it.

By the way, I NEVER took Copaxone. I always wanted to know what made me better and so I only did Dr. Wheldon's protocol. Copaxone frankly terrified me.

As for your thoughts of three protocols, Dr. Wheldon's protocol and Dr. Strattons are basically the same. Dr. Wheldon's is very clearly outlined on his pages and, again, so easy to comprehend, which is important for those of us who went through treatment on our own. When you see people making varying changes to the protocol on cpn help dot org, it's because their prescribing physician has done so or because some are quite impatient and try to tweak the protocol for their own purposes. In your case, I think it's important to present one protocol and to be rigorous about following it without variation. (If you're even thinking of the Marshall Protocol, we aren't advocates of it at all. It restricts vitamin D and we have seen vitamin D has a distinct advantage in killing cpn.)

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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

Hi Ken, thank you for noticing the humour in my chosen name. David saw my choosing such a name was a sure sign that I was recovering!

Don't forget to let me have your email so that I can send you those papers. As you say, David is clearly a real doctor but the real doctor who actually started this off is Charles Stratton a microbiologist at Vanderbilt, who now works in conjunction with one of their neurologists, Ram Sriram.

I think far and away your best choice would be to take the papers along with David's treatment pdf to either your general practitioner or your family friend who is a doctor. If this person then wants to contact Stratton, he works this way with many similar doctors on your side of the Atlantic. When I first started it was very difficult to get a GP to be adventurous and treat MS in any other way than that prescribed by a neurologist. Over the last few years, though, things are changing and there is a growing consensus of opinion that these are relatively harmless and certainly cheap drugs, so why not give them to people for whom there is nothing else available? David hears from patients all the time that their GP has agreed to prescribe.

The difference between the protocols? David can use roxithromycin which isn't available in the US. Other than that he prefers the gentle approach, but that is something also preferred now by Stratton in most cases. Another difference is probably the fact that David primarily treats hospital patients and sees them on a daily basis. Stratton, on the other hand is primarily a researcher and teacher. They are, though, the best of friends and share the same sense of humour.

When I started I didn't think it would work. I had only taken antibiotics twice before and kept hearing from friends that what they had been given did absolutely nothing for them. David came home with a pack of doxycycline. "Right, take two now!" "Well, shouldn't I wait until the morning so I don't have to take them both together?" "No, take the both, NOW!" It didn't take long to convince me.

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.