Cpnhelp.org

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you'll find many here plus or minus 10 to 15 years your age.   CPn just keeps on multiplying and multiplying over a lifetime so it figures that some of us find ourselves very dibilitated at this point (and then there are the younger folks that are fortunate to have found this information early in their lives but they don't seem to post as much unless they truly, no longer have much of a life to get out into to do.There are false positives so here we say that a positive result for CPn is great but a negative will that does not rule out CPn.So learn about the treatment program.  If you find a doc you need to oversee his compliance with these protocols so you need to know and not be so completely in the background.    Even my wonderful doc since Dec. 2007 does not really grasp all the fine points from what I can hear with some of his suggestions.  He is dear and willing to learn that is what you are looking for.If you can travel then Dr. Michael Powell in Sacremento could be an option.  There was a member who had a doc in Atlanta but she has since moved on and no longer posts.Generally those who might help you send a private pmessage with some suggestions we no not post many names openly here.  The name above is an exception.Supplements, and bowel flora are important and you can look into beginning to start them as myou are learning.   You have to dig for the information here.  No one is likely to answer questions with much depth so you have to hold up your end of the learning so that brief responses make sense to you.I wish you as much success as I have had with this treatment.  Louise

I started looking/learning about the CPn-MS phenomena a year ago, and understand the process is 'risky' healthwise, requiring monitorings, etc., especially for older patients... just at that time, I was still fighting for SSDI, medicare was two years away, busy... and I understand the 'test' for CPn can be done in more than one way, depending on the intrusiveness permitted and level of information needed. There is indeed a lot to know about CPn.I have been using milk thistle daily as a liver conditioner (try to run a liver function test whehever I can get some doctor to pay attention long enough during one of my annuals), and take daily a whole food organic multiple vitamin (200% D3, etc. - big horse pill). I love the sun and get into it as much as I can, but have to watch overheating as the sweating issue has been known to make me into 'two-face' (left side white/dry, right side red/sweaty). I walk a kilometer daily ('cept day after avonex) to keep legs 'active'.Managing stress seems to be the most important facet when it comes to MS. 

I disagree that it is risky for elder that is, unless you don't know how the treatment is designed to be administered.  And the reason that the false negatives occur is that over time the body stops producing antibodies against it unless it is in a somewhat active phase the immune system gives up!If you need documentation to convince a doc good luck.  And I would stay away from liver function tests as they are a good reason to get shut off from tx.  There is not other treatment for most of these diagnoses so why keep to tight a look at  yourself docs love to have something to blame when they are uncomfortable with something that they don't understand and most do not take the time to understand CAP.Happy searching and much success to you.Louise

Used to live in Nashville near the fairgrounds... got a sister up there now. Considering moving back...Just curious - about what is the typical monthly drug expenses for this therapy, assuming medicare with some part C perscription drug coverage is all the help I can get?... and adding any typical monthly/quarterly/etc. medical testing expenses for required typical monitoring, etc.? 

Insurance coverage varies vastly state to state.   My resident state will deny long term abx if the dx even hints at Chronic Borellia. And I made sure that mine did not. There have been in state Infectious Disease Specialists that have testified at the state house that there is no such illness as chronic Ly__ D______. Also particular abx are on a list of some sort and Azith is one of those.  I was only allowed enough for half a month of cap and denied the second half.  Consequently I did not do Azith I ordered Rox__ and was prescribed Clarith____ which for some reason was not on the same list.