Cpnhelp.org - Chlamydia Pneumoniae Treatment

This is all wonderful, Jim! And a very big thank you and a salute to you for the creativeness you showed and still do in its conception and execution.

As for the money - my vote would be to send every extra penny to the Vanderbilt lab for more real work. I would bet a call for donations in the future to the site would bring them in a hurry. You have very obviously made every cent count. I, for one, would send the same as I have every time the call has gone out. This site is doing a service to humanity and must keep going.

My heartfelt thanks to all of you helpful, generous and wonderful people.

You are all heroes.

--
Corinna 

Thanks, Jim. And Bleu, and Marie. I remember being so relieved when you started this site, knowing we TIMS folks would have a 'safe' place to post about the protocol. For me, life would have been bleak without this protocol, and, of course, this site. I was diagnosed on 19 August 2005 with 'probable MS', so cpnhelp.org happened at the 'perfect-est' time.

Would that mean USA rates "sickest" people in the world? <tongue in cheek>

Awesome stats JimK. I applaud you and all the great people from all over the world that are here. It amazes me how very generous you all are with your wealth of knowledge and care giving tips.

Frankly your openess to all is refreshing and gives one hope in mankind.  Slainte MM

Accolades and thanks to all for making this site possible and thanks to all members for "being there" (for myself and the others in this process).  The support and knowledge of this site are what keep some of us from giving up.

The stat's are powerful proof the information is being sought!

JeanneRoz

MM, I rekon it makes people from the UK the sickest in the world when you consider the populations of the two countries.

Jim I thank you from the bottom of my heart for starting this community, and not just today... I thank you everyday in my thoughts...  And Marie and Bleu too of course.

I also thank all those people who have responded to my cries for help at the beginning of this journey and I stick doggedly to the protocol because of their example. 

Jim,

I cannot thank you enough for all your efforts with this site and the same goes for all of the "old-timers" who were here for me when I first joined up so long ago.  I also cannot thank the good Drs Stratton, Wheldon and Powell enough for their tireless efforts to heal what many would consider the unhealable.    Their efforts and our resultant healing has proved that these chronic (or worse) conditions don't really have to be chronic.

Happiest of Birthdays Cpnhelp.    You've given me my life back...

Happy Birthday Cpni! And many thanks to Jim and everyone who has contributed to the site. I had an idea that a Cpn conference would be a way to increase public awareness. Many organizations have such an event. I know it would take a lot of work. Maybe there is another event that we can piggyback onto. Just a thought. Today is a happy day. The morning sun is shining and I just finished another Flagyli pulse. I have been moving the 5 day pulse closer (9 days apart) for the last three pulses.And I feel pretty good this morning in spite of that. I will always be grateful for this site, the sage advice of Jim and other special folks and the research of all the medical professionals. Go CpnHelp. I will always be here to help the newbies!! Raven

Happy Birthday CPnhelp.org... you rock!!!

If I have to have a chronic illness to deal with, well, at least there's such a great site and group of folks available to help me find a way out of it!  

I can't wait for the day that I too can look back and say that now I have something to "pay forward" to the newbies myself!  

Matt 10:8 ... freely you received, freely you give.  

Raven, not to hijack but what you can and are doing is exciting! I am impressed - you must be recovering very fast from the prlses!

Hi Rica, yes, I guess I am getting well! And you are doing so well in spite of the recent surgery. We went to the county fair and saw the goats. I thought of you and your lovely goats. They really are very sweet and funny too! Two little babies were head butting each other. We had a good laugh!! Raven

Is this a California County Fair? If so, the goats belonged to dear friends of ours and may well have contained the National Champion. Glad you enjoyed them!

Thanks Jim and all others here on cpnhelp.org.

From the bottom of my heart thank you all for this website that support and help so many,in the worst time in our lives. Beeing sick with this and dont get right help from doctors.Then my brother found this website and we could learn about cpn,endotoxinsi and porphyriai that we suffered from. Now we are our own experts thanks to you all!!!And we know how to fight this and have hope again. So thanks and happy birthday to cpnhelp.org and to me too because Im 37 years old today. Feels good to share birtday with my best friend cpnhelp.org!!

Wish all good luck with treatment.

Best Wishes from Maria in Sweden

Happy Birthday Maria!

Thanks Corinna!

Great work Jim, Bleu and all the other old timers who have been there for us when we needed help most.

My vote goes to donating any surplus funds to Vanderbuilt too.

Vanderbilt. Definitely.

Maria, Happy Birthday, it was also my son  Alastair's  birthday, so we had a double celebration yesterday.

Reenie, you are already contributing

 

Thanks Jim, for providing this interesting, informative data as part of the 3rd Birthday Of CPnHelp.org celebration. There is so much to celebrate, this data clearly shows the exponential growth and web presence, the reach that CPnHelp.org has had in cyberspace and the site is definitely fulfilling it's mission; "Emerging information about chlamydia pneumoniae in disease & its treatment. Passing help forward!"   If you think of it at half year, you might share the data again as we will see a broader view of our connection as a resource site that is continually evolving, I would be truely interested in that update. 

I am in awe that we each have an opportunity (even as individuals affected by debilitating chronic illness) to share triumphs and agonies reaching into the lives of other chronically individuals and inspiring hope, one of the strongest indicators needed to recovering a life.  And you are so right regarding the kindness, helpfulness, tolerance, and sometimes intelectual sparing that goes on here.  I was certainly raw and ragged, brain fogged and flat out exhaused (bed to couch to microwave to toilet to couch) during early treatment when I signed on 51 weeks 4 days ago, this is my CPnhelp.org membership week too.  Now 2 months into my second year it is sometimes easy to forget how porphoric (that may be a new adaptation of the word, I will admit) I really was. 

Thank you, Michele, for organizing the Symtoms and Remedies page in particular and all the recent Getting Started Tab pages in general) I use the Symptoms sorting chart frequently as a check list to gauge my porphoric / endotoxin states which comes and goes during treatment and which I manage based on information I have found through CPn.help member posts.

Wish I could remember who's sharing to atribute the information about Cholestyramine. It was very low key and I researched the substance as a result of that comment.  I suffered severe Porphoria symptoms for the first 5 months of treatment and before as part of my initial presentation of Chronic Persistent Chlamydiae Pneumoniae. 

And although Cholestyramine may not be for everyone, I would never have been able to seek it out for my treatment plan without absorbing the imformation casually mentioned on this website.

I have found that consistent use of Cholestyramine, once daily away from meds and a major meals, with a small fat stimulation of bile,  to be key for its success in reducing my symptoms list for me. 

Summer heat and humidity has taken it's toll on me this season and I am now exploring neutraceutical support to augment my personal energy as I continue to treat porphoria, Continue the Wheldon CAPi, and research and add energy enhancing supplementsi as adjucts to my CAP.   A number of pearls and gems that have been casually mentioned here then researched further by me for my self education and finally trialed for my own experience, these continue to enhance improvement of my specific presentation of symptoms.  All this made possible by my attendance here at CPnHelp.org.  This is priceless from my perspective.

This site is not a one size fits all approach and we all come with different forms of distressing symptoms, life challenges,disease presentations and in sharing the different points of view we have of the opportunity to share in ways that are truely inspiring and quite remarkable.

I would find interest CPnHelp.org sponsoring an event.   Even a rather small event would cover many bases and do much to further the mission of this community. 

I think the money would have a synergistic eponential effect spent in that way.  And there are ways to capture it for sharing afterwards, for those in the future and those unable to attend for all the various constraints that do exist.

Through sponsoring an event, CPnHelp.org could once again give freely more to the world just as we all continue to freely recieved.

Knock and the door will open (it has for me her at CPnHelp.org)

Seek and you will find (truely I have)

Freely you have recieved (can I say more?)

Freely give (CPnHelp.org has, does, and will do more), thank you all, so very very much.

This is my first experience with a cyber based community that I follow and connect with regularly.   I sampled a few casually during my early days of treatment and no where else do I find as much experience, hope and clear perspectives shared as that which I find here.

And most importantly personally for me, I continue to move on the continuum towards greater well-being and increasing my level of wellness.  Happy Birthday number three CPnHelp.org!

Louise

Signature for this point in time below;

CFSi,  CPN positive antibody titer.  Bb postitive antibody titer.  

Wheldon CAP 6/07,  Doxyi 100 mg. BID, Roxi 150 mg BID, Tiniazole 500 mg BID pulses,

Vit D3-4000IU daily,  Magnascent Iodine 8gtts/daily,

S.O.D.3  [KAL Brand] in AM, SAM-e with Vitamin B complex in AM, Calcium Pyruvate3.75G (amount of Pyruvate based on my weight) to enhance cellular energy production and decrease my fatigue level, which is my primary presenting symptom

Cholestyramine 1-2 packets at HS PRN away from main meals and with a small fat stimulating snack to stimulate bile flow to inhance effectiveness of cholestyramine for Porphoria & Endotoxin level reduction.

All supplementsi on supplements list under Getting Started Tab at top of this page.

Also Bio-identical hormones for menopause and osteo prevention support as well as for improved sleep and daytime wakefulness.

Also Phosphatidyl Serine to support normalization of Cortisol Levels to improve depth of sleep and duration of sleep.   Also Clonazapam 0.5mg HS, one tab only per day to increase length of sleep cycle, no daytime use needed.

Also - Diet 40-30-30 type diet.  Occasional glucose tablets or smarties for periods of exhaustion.

I guess that's it for my current signature,                                                                          flushed out as I would like it to be as of today, Aug 25, 2008.

May some of what has helped me, perhaps help someone else.                                              "Passing Help Forward". This is what is currently working well for me in my humble opinion.

Thanks Michele!

Jim K and the other pioneers in this community. Your efforts have made a difference in many lives. At the end of the day, isn't that what it's all about? We were ALL "newbies" at one time and so we all share that dazed and confused memory. It is your efforts and commitment to educating, counselling and listening that has crossed the borders of time, distance and culture.

Until this crazy pharmaceutically rmanipulated medical system gets their priorities straight and works for real cures instead of superficial bandaids to keep us sick, we depend on people like you all to continue your work. You are spreading the word and sharing the hope!

God Bless Dr. Stratton and Dr. David Wheldoni!

Thanks to all who contribute to this site....It sure helps people like me who are ill.

Best...Timaca

Meeting of us would be very nice, for sure, but without any profit. We can meet virtually via skype, ICQ etc., send our photos to each other and chat via chatting programmes. I am for the idea of "Donate an excess above a certain amount to the Vanderbilt Chlamydia lab for research". We still need more and more research to be strong enough in arguing with doctors and politics to declare the CAPi treatment officialy as a standard treatment of Cpni. I know really many people around me having for sure the Cpn but their doctors "are sure that Cpn is not a problem and we are crazy fanatics" or would not prescribe ATBs because it is not "explored enough". We really need strong arguments not only in us, in broken of patients. We need a strong proof in research because doctors do not take us, the broken of patients, as a cogent proof. Or I have another idea :) Make a nice holiday trip to the Czech Republic :)

Michele,

Thanks, I try to add what I can, as I see Timaca, you are also adding to the site.  Nobody takes from this site without giving something back.  This is such a special group of people and I'm so glad to be a part of it.  We are all willing to learn and nobody here, not even the researchers or Drs feel they know it all, yet. 

Z, yes, you are so right.  There are so many folks out there still suffering and being told they are not sick or they are sick in their heads.  Hopefully, someday, that will change as people like you get well and spread the word.   

Happy Birthday CPNHelp! and thank you Jim and Mack and Sarah and Raven and. . .  and . . .  and . . .  and -- of course Drs. Stratton and Wheldon. I would have been lost and hopeless without this site. There wold have been nothing and now there is wellness to look forward to.

A huge convention would be nice but I'm not sure that the "MSi Follies" are ready -- maybe next year. 

Nancy 

This is a bit late, but once again I would like to thank everyone for their hard work on this site!

As for the extra coin, I wonder if we could set aside some of it for a benevolent fund for people who don't have the money to pay for all the supplementsi.  Some money could be administered on an as need basis by private consideration.  I have noticed some here don't hold back if they can't afford some things.  The fund would not be widely advertised or anything imhoi.

 

Just my 2 cents worth

peace

r

 

I wonder what I would have been doing if i had not found this site.  I expect - accepting of my illness (ME/CFSi), angry about the effect on my young son, hoping for improvement, practising 'pacing'. 

When we are ill - and perhaps isolated, broke and misunderstood - it is understandable to feel angry at the world;  i know i have.  BUT i also sometimes remember the people and organisations who have helped me - it need only take a few  - who have pointed me in the right direction when i have needed help, money, advice or inspiration.  And CPNhelp website, and all who sail in her, is one such body.

with thanks,
Blackfoot,
England