Blogging Treasures gone missing!

June 10, 2010 UPDATE:  

Now, one year after the start of this blog page topic and much is still the same here at CPnhelp or more so it seems to me.   

CPnhelp remains an important archive for those who want information to share with their providers in co-management of their healthcare.   The Getting Started page, CPn Handbook, Patient Stories,  Physician Page and Research tabs at the top of each page are the true focus of the website.      I do hope that those who are new to the website be sure to investigate them fully for the information that they need and not to rely on the discussions and comment for the how to of CAPi treatment.  

Personally, I will continue to blog regularly as I believe that the CAP has been instrumental in my return to functionality. 

I am actively engaged in adding adjuncts to my treatment, yet I do see see CAP  the broad base that I needed to get started on my return to functionality. 

I am sharing my adjuncts because the initial year was so very hard on me and I believe that adjuncts for certain populations could improve the ability to tolerate the CAP and stay the course.  If only one person is helped by my particular twist on adjuncts, then I will be paying it forward, all the help that I have recieved here.

I am backing out of involvement here with a smile on my face and in appreciation.  I seek to be joining all the other folks that are weller and busier now, three years is a considerable length of time to be engaged here and after thoughful consideration, like so many other who have found improvement with CAP, I will be taking a breather from responding to individual posts.  

I will be checking my pmessages occasionally, from time to time, to pick up any from old friends that might send them.  I remain ever grateful, to the creators of this respository of such important information.

I do plan to continue to blog as I experience ups, downs, personal solutions and improvements and perhaps new discoveries, just for my record and any who may be interested.   I no longer expect supportive feedback and/or discussions around my blogs.  

In the broader view, three years here have been most helpful for me.  Thanks for reading.  Louise  

Original Blog:  Blogging Treasures gone missing!  The times they seem to be changing and I thought I would just add a note that I miss hearing from more of them that have been doing the protocol and what their situations are currently and the changes that they have made, the shifts of neutraceuticals that they are trialing and their responses and just generally the ups and downs that we all have in life.

My diagnosis of CPn infection by antibody titer is what brought me via google to this well documented and technically speaking website.  Some find this website and set their sights on treatment.  I needed to treat this infection and found this website and immediately realized that there was a wealth of information that offered me that precious perspective of hope and guidance during a very stormy and overwhelming early reaction to treatment.  So much so that I was so foggled that I had difficulty signing up as a user for about 6 weeks, so I just read and read duirng my first month of treatment when I was overwhemingly challenged by my die off effects of Doxyi at the bacteriocidal (kill strength) of 200mg twice a day (BIDi) as I was prescribed.   I also recieved my Dxi of CFSi/FMSi with the prescription of Doxy and as may with CFS as their dx I got worse, I was already extremely challenged but much much worse.   I could make it to the bathroom, computer, microwave, but was basically in a state of incapacitation and reading here was a diversion and a support.   So I spent a lot of time getting to know the posters in the internet community with their perspective, trials, joys and interchanges.   I wouldn't call it lurking because I couldn't even figure out how to get into the site, as amazing as that might sound.  Finally I cleared enough mentally to sign up!  And then I showed my advanced porphoria state but make a few faupauxs and being reactive in responses etc.    I thank those that worked through that time with me.  I see similar situations repeated over the past two years that I have actively gleened insight and options from the posts here.

So I miss the old timers that used to share and I think that Joyce was all to correct with her post about a year ago that we were headed in a different direction and that the community has grown so much and become so diverse that folks likely have begun side conversations and groups and no longer process here. 

I have tried to start some discussion topics over the past year and most of them flop.  There seems to be a level of conservativism in public exploration of topics that has evolved that I have not been able to get through.    I too, find myself less likely to respond as I am responded to less perhaps as a result of this. 

I continue to be greatful for the body of knowledge that is emassed here for reference and will check it periodically for additions.  Yet the interactive quality has deminished from my perspective.   People are changing their protocolsi and adjuncts yet leaving signatures blank or well out of date with lack of specificity, something that was unusual two years ago.   I learned so much from people's signatures and for one reason or another this has lost importance.   

Perhaps more and more are getting weller as I am and getting on with their lives, that is my hope.  This would be nice to know.  Yet the silence and incompleteness generates wonder in me and of course the nature of developing relationships on-line lends itself to abrupt cessation.  I have sponsored several professional on-line closed membership email groups exchanges and each had its time of maximum activity, and then decline.  

So I see this part of the website changing and just want to document this time of change if nothing more than to myself.     At this time of change I am glad that I need this support less and less as I am doing well on my extended ABXi time off.  I expected 1 -2 months, it has now stretched to 4 and I have not had a relapse that I can observe.  I would not claim to be finished and will begin a round of extended intermittent after my next provider visit this week.   I will see during that intermittent round what symptoms kick up if any and my continued treatment plan will be revealed then.  

I do wonder if my high dose Vit D3 therapy and my high dose Iodoral therapy have been helpful in keeping me well during this interlude.  I was quite well when I started the abxi break at 20months of CAP tx and still remain the same coming up to the 2 year mark and being off now 4 months.  This rapidity of improvement would have been my wish but not my expectation, I expected to be on continuous for 3 to 5 years given my diagnosis of CPn and Bb.   I believe my supplementsi, neutraceuticals and adjuncts contribute to my feeling of well being.

So I ramble and this is my blog and those that detest long reads have since clicked on to other posts.   My wish for everyone, even those that have told me directly bug off, is that the road to health and wellbeing be revealed before them.

I am anticipating an uneventful intermittent CAP which allows me to get back fully into life outside my "sickness behavior of the past" in a sustained way.  The only way to know it is to do it.   Thanks to  Wheldon/Stratton CAP I'm ready and see myself strong and healthy dealing with chronic infectionsi with gratitute for the information and support I have found here.

If you have made it through, thanks for reading.   Louise

 

Comments

June 10, 2010 UPDATE: Now,

June 10, 2010 UPDATE:

Now, one year after the start of this blog page topic and much is still the same here at CPnhelp or more so it seems to me.

CPnhelp remains an important archive for those who want information to share with their providers in co-management of their healthcare. The Getting Started page, CPn Handbook, Patient Stories, Physician Page and Research tabs at the top of each page are the true focus of the website. I do hope that those who are new to the website be sure to investigate them fully for the information that they need and not to rely on the discussions and comment for the how to of CAPi treatment.

Personally, I will continue to blog regularly as I believe that the CAP has been instrumental in my return to functionality.

I am actively engaged in adding adjuncts to my treatment, yet I do see see CAP the broad base that I needed to get started on my return to functionality.

I am sharing my adjuncts because the initial year was so very hard on me and I believe that adjuncts for certain populations could improve the ability to tolerate the CAP and stay the course. If only one person is helped by my particular twist on adjuncts, then I will be paying it forward, all the help that I have recieved here.

I am backing out of involvement here with a smile on my face and in appreciation. I seek to be joining all the other folks that are weller and busier now, three years is a considerable length of time to be engaged here and after thoughful consideration. Like so many other who have found improvement with CAP, I will not be responding to individual posts as in the past.

I will be checking my pmessages occasionally from time to time to pick up any old friends that might send them. I remain ever grateful, to the creators of this respository of information.

I will continue to blog as I experience ups, downs, personal solutions and improvements and perhaps new discoveries, just for my record and any who may be interested. I no longer expect supportive feedback and/or discussions around my blogs.

In the broader view, three years here have been most helpful for me. Thanks for reading. Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Thanks Louise for this

Thanks Louise for this honest question.

Michele said: "There are of course some people who have not succeeded in getting better and they drop out for the opposite reason."

I "lurk" here to see how people fair over the long haul and I have been wondering, what ever happened to Reenie??? She was so gungho about this protocol and had bashed her previous protocol here publicly, so I wonder, where is she now? She was having a hard time last she posted and that was a couple of months ago at least. We have similar health issues so I have watched her posts to see the effectiveness of this treatment. Did she quit? 

I know that I have posted

I know that I have posted much less in the past few months-for basically two reasons:  I just keep plugging away at this with not much to note.  After a year and a half it is just routine, I guess.  I try to blog after every Tindamax pulse (currently doing a pulse which will be finished on Saturday).  I also find myself to be a little conservative in what I say publicly after having some conversations with the suspicious poster "Pgy" .  I am always happy to pm people if they would like to know something.    I will also continue to blog after each Tindamax pulse.

Lori 

 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin Di 50,000 IU weekly

Tues. morning and Louise,

Tues. morning and Louise, this is the first time I have read this post. Thank you.

I am far from better and continue struggling along.

I am speaking to my doctor later this morning and will try and post afterward ,what is relevant.

Michele, success is ever so slow to attain. I have  had to lower my standards of success.

Onward and upward!!!!!!!

Loulou

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

I've not gone away, but not

I've not gone away, but not posting much as I am going through some puzzling health events and am waiting to see which way things turn out before posting.

I'm lurking though.   

This is the way of things though, there is always a roll over of members and naturally when people get better they drift away and begin to lead their life fully once more.   There are of course some people who have not succeeded in getting better and they drop out for the opposite reason.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Louise, your post is very

Louise, your post is very insightful.  I know I'm one who's barely touched base here in the past many months.  I know you've been here throughout and helping everyone along, and many of us appreciate it.  Now you're inspiring us with your wellness.  I hope to be there someday, but somehow I can't slow down my life right now enough to give full attention to the treatment, although I'm still at it for sure.  I've had to take it much more slowly, but I'm not stopping! 

Thank you for your thoughts.  I think you're very right!

Also, I tried to send you an email awhile back, but I don't know whether it worked.  Let me know - I'll try again.

Finch

ME/CFSi since 1991. Cpni diagnosed 6/07. CAPi started 7/07. NACi 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyli to Tindamax 500mg 2x per day for 5-day pulse.

Louise, You have been a huge

Louise, You have been a huge inspiration to me during my treatment. I can remember when I stumbled on this site reading your dailly ups and downs.

I have yet to get to the place where you are in your treatment but I'm so grateful for you posts and responses when I needed the support. It is great to hear of your employment offers and I wish you the best in all you do.                                

Best wishes,

Bonnie

 

 

 

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

  Louise, I can see that

  Louise, I can see that you used doxyi and roxyi at higher doses as adviced in lyme treatment. So did you think that they are eradicated (cpni, bb, co-infectio ns). Do you think to get an CD57 count before leaving treatment?

YILMAZ

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Louise, I too miss some of

Louise, I too miss some of the old timers. I am greatfull that they were here when I started the treatment in May of 2008. I have noticed so many changes in the site in the last year, less and less familiarity. I am a strong believer in the "reason, season or lifetime" theory when it comes to any kind of relationships and so I think this one has been all three. The reason is self evident, the season has been the past year and the lifetime is going to be the difference that it has made in my lifetime of health. I keep checking in here every couple of days as my husband does as well, but we are moving onwards and upwards and this treatment doesn't consume us like it once did. I think that is what happens. At first, we eat and sleep this treatment, then over time, we make it part of our lives and it becomes more routine. We don't have the same need to come here as much.

 Take care and keep getting stronger.

Todybear.

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.