Cpnhelp.org

Click on the persons name, then on their page click where it says "send private message." Easy!

I tried that but it went to the wrong person.  I'll try again.  Thanks.

Hi Lynnp,  Sorry to hear about your confusion, it can be hard to send a pmessage correctly if you cannot remember the exact user name and cannot find a recent post.  I have in the past had to sort through some older posts to finally locate a person.   I was so brainfogged and cognitively impared that I could not seem to sign on to this site for almost the first two months of treatment I was quite befuddled and very limited in ability to physically function for complete lack of energy, everything I did was by the sheer force of willing it.  Hard to describe as I do not have neuro symptoms that would impare movement.  Severe CFS got worse.  Now I am much improved with intermittent energy dips that are the culmination of creeping up of my level of porphoria. 

This happened massively this past month day 11 of my pulse and I have decided to take one packet at bedtime upto and through the next pulse to reduce the porphoria to a much lower level.  So far all poor memory and bleak outlook has now vanashed.  Porphoria can be present from CPn infection yes it is secondary but can be secondary to the infection alone before treatment is even started.  To me that is something that explains much of my unrelenting fatigue and weakness, the list of porphoria symptoms seems made for me both for my primary expression of CPn and my reactions to CAP.

LynnP, I am so much better since starting CAP June 2007, it has definitely been worth the experience, I am beginning to get my life back. 

Louise

Louise,

My doc said I didn't have cpn which I know doesn't mean much.  I asked him about the Wheldon protocol and he said he doesn't use it.  If I had tested positive he would put me on doxy and another antibiotic for a while I think.  He ran another test so I need to check on it (cpn again).  I am so tired of feeling horrible.  Glad you are doing so much better!

Hi LynnP.  I really hear you about feeling horrible so consistently that there are not good days.  It is hard tor read posts and be denied the simple basic Wheldon Protocol by busy, detrmined MDs that vote na.  

In this day of managed care, being able to just up and go to someone else is often prohibitive and one realized that there are limited options within their medical system and coverage.   This is true all over the Globe as we here in the US and from different EU posters, UK, Germany, Belgium, Checz, Turkey, and all those that I am blanking on.   

The frustration that it causes ( and that is a mild choice of words).  What has helped me is the genuine sharing of open information here to assist me in becomeing an informed patient.  I see that you are in MemphisTenn area and you have been with us for a month.  It has takene quite a few "regulars" here time to find the right mix of provider coverage.

Personally I have an in network provider who is aware of my out of network provider that is managing my ABXprotocol and biohormonesand bone healthtreatment and relavent testings.

I did not give up my connection to the local emergency network just stepped outside of it for specialized care.  Just the way I delt with it for myself.  To finally find the right mix for me took 5 months once my original dianosing treatment clinic closed shop.

Brain Fog is a funny excuse for forgetfulness to some who do not really know the depth of powerlessness, frustration and incapacity that often occurs for the individual.    When you were once a reasonably sharp tool and then become one of the dull ones in the shed (a local expression, Not one of the sharpest tools in the shed), it is hard for even the most caring onlooker to know you are in such a prison.  For Brainfog in my situation, treatment for that involves cholestyramine.  I have duplicated results enough times to know it helps and may likely even help provide a bandaid at any point in CPn infection.  JMHO of course.

Blessings to you in working your situation for your satisfaction.

Louise

Louis, cholestyramine is Questran for cholesteral.  Is that what you got it for?  I have a primary care doc's appt and I'll ask him for it because I think my cholesteral is high.  How much do you take?

No it's use by some MD's is a bile sequestor, away from meals with a small bile flow stimulant (something small and fatty) that causes it to flow.   As you may have ready porphoria (look at the list of symptoms on the reactions and rememdies page under the tab getting started.) is the cause of many of our complaints for some of us.  Particularly several fatigue and other life challenging symptoms.   Take a read.  The only way to  be active and proactive in discussions with any provider is to know what you want and why and sell it to them before they have the chance to quickly dismiss.   It is a fine balance getting in there before they say no.  If you can you have the potential to get what you need.

Everyone here learns as much as they can to be active participants in their own care.

Louise

My cholesterol is fine.