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.
, 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.
, 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.
, 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.
, 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.
, 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”.
, 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.
, 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.
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
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