Cpnhelp.org - Chlamydia Pneumoniae Treatment

I wish that this site wouldn't crash every time I try to read the thread on evidence based medicine.   It's not the computer as it doesn't happen with any other site but on here there are several threads I can't open, any idea what's going on?

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

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Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

It may be time for some website maintenance. A couple other users have reported problems. I'll ask Bleu to check it out. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (Continuous protocol)

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

As crazy as this sounds, I would like a page with  explanations of abbreviations.  I have no idea what RRMSi, ME, cfidsi, etc stands for..
 

Memphis, TN. 6/26/07- CPNi Titer 1:256 (normal 1:16); 6/27/07-started NACi; 7/2/07-started doxycycline 100 mg twice daily

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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 2400mg, doxyi 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli pulses

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

 Actually, we just need to update the glossary with these terms, so that you can point at the little note thingy on the word and get the definition. On the list with all the other things I don't have time for! But collect any words here that need definition.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (Continuous protocol)

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

I like the seperation of diseasesi because even though there are similarities in the way they begin and treatment, as a somewhat newbie I still kind of tend to look for success stories within my disease despite knowing the cause may be similar. And it gives me more hope this way. I also don't know many of the abbreviations on here.

31 year old woman in Portland, Oregon. Living w/Sjogren's since June 2006. Super dry painful eyes, dry cotton mouth on liquid diet little saliva, dry soar throat, dry nose can't breath, dry skin, dry hair, stomach bloating and fatigue. 

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31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAPi since summer 2007 & Infrared TX. Doxyi 2X a day daily 100mg each, Zithi 250mg 3X a week, Flagyli every 3 weeks for 5 days &

My wish is that there could be some way to flag in a way easily to find, the blogs of the CFSi/FM users.  Reading the success stories of the MSi healings the morning that I was to fill my first doxyi ( Rx 200mg twice a day (BID) ) inspired me and I stopped at the Health Food Store and to get my NACi.  I started the NAC 600mg prior to my first dose of Doxy with which I took 600mg more of NAC!   Not to be recommended as I now have learned.  I did have my CPni titer results in hand 1:512 High and after quickly learning about the need for covering the EBi's I was game and added it to my list of supplementsi.

I expected Herx-like results from my several hours of reading in the vastness of this site as a guest, and my contact with some Lyme Disease positive friends (though I was not yet dx with Lyme and the following month a positive wetern blot following Doxy therapy was drawn).  I was majorly effected by the Doxy and NAC and had difficulty even registering as a user, it just would not go through for me (Cognitive impairment, brain fog, lack of skill, unable to digest directions, all these are possible and probable.)

I am not for segregation, as Michele and other on this thread I agree with the general opinion that the CPn is managed with the same protocol and all voices have something valuable for me to hear and learn.  How

However, is there a way that brainfogged folks could be lead by the click, so to speak to a few key blogs or forum links that could help them get it that this protocol is for their constelation of symptoms and the particular challenges of starting to fast which causes some to give up.  I see the MS folks as generally more determined in some ways because they know from experience much of what else they have tried has not helped in a sustaining way.  ME/CFS, FMSi and other conditions generally have less mobility and neurological impairments to convince them to stay the course.  How did Rica put it, it was so good in a welcome yesterday about making oneself feel sick to get weller.

I would say that proportionatly there are more MS signatures posting, could be that they often have a longer recovery period and are more vigilant in watching the posts.  I have learned much from them but newbies breeze in and say I don't have that dis-ease and may be more prone to leaving.  Or once a ME/CFS, FMS signature gets to feeling weller life goes on and the visits slow down and the posts become more rare.  The posts are there now that I have been able to dig and come across them and they are valuable and alas more difficult for the foggled to find.

For me I think I have almost figured out how to use the system so that is WONDERFUL and the bookmarks is helping keeping the information in my line of vision.   I know Jim,  I have been asking for less block, now I more blocks.  Think I have said quite enough for now.  Hope that some of what I have tried to say is understandable.   Louise 

Louise, US, Northern New England,   CFS/FM,CPn,Borrelia B.     Started NAC 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Louise have a look at the box on the left where your account can be accessed. Below that is an option for "category browser", if you click on that you will be led to a drop down menu where you can choose to view all topics related to different diseasesi, antibioticsi and lots of other subject categories.

I have just found this wonderful way of being presented with all the MSi information I could want! 

HTH Carol 

New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAPi 6/07: Wheldon

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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #10/16...I can because I think I can.

 Well, Louise, perhaps you have assigned yourself a project for the community: a set of links for the CFSi/ME/FMSi that are the "read first" or "read these before starting," as you are fresh to it and have probably found these (or are finding them) as you go. This kind of thing can't be done automatically by the system, but has to be selected by a person or two who can say, "When I found this post, it made sense..."

Would you like the editorial assignment? You don't have to do it alone. Post a forum thread and have new folks add their "essential reading" links. Then you can sort them out, or we can put them to a vote (there are ways to do this). 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Thanks Carol, Yes that is one way of getting all and any thread that has been defined correctly and it is too huge for those with fatigue and cognitive challenge theat is rather profound, in my humble personal experience.  And much good info has been added in various other catigorizations.  I am just starting to get the structure of setting up a good forum queston and that I can put it under a number of subheadings etc.  Those aspects of using this wonderful site that make it searchable.  

Louise, US, Northern New England,   CFSi/FM,CPni,Borrelia B.     Started NACi 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Yes Jim, I would like to take on the challenge of flushing out this idea and focalizing the project.  Will think of a topic line for a forum thread for new folks and start that avenue of input sometime soon.

However, I see that this community project would well use the input from the ranks of the more seasoned users with past and/or less and less bothersome CFSi and Brainfog "foggled" issues to pick out the gems of inspiration for the "foggled among us". 

Clarity is returning for me in waves, now into my 4th month on NACi and Doxyi.  Before I started on the CAPi 6/24/07 Reading was a real challenge to stay on track, absorb it, retain it and not fall asleep trying to do it!  I would like to add a site aid for folks who are challenged in similar ways as when I arrived here! 

I am letting your challenge sit a bit with me. How to sort it all out and  to get more of the BEST of THE BEST ME/CSF posts easily accessible on the surface as it is with the BEST of THE BEST MS info, IMHOi of course I will add.   There is so....... much here it is overwhelming for those in need of it that are experiencing limited focus. 

For now I will continue this discussion on this thread and see what posts show up.  Thanks for listening.  Folks on this site do really listen. Got to close, I am feeling a wave of that attitude of gratitude sweeping over me.  Louise

Louise, US, Northern New England,   CFS/FM,CPni,Borrelia B.     Started NAC 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

I'm adding to the list to bump up this thread.   Please add some wish list items for the website.

1. ability to change username.

2. category search engine.

3. Alphabetical listing of members.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I know I've mentioned this before, and can understand if it can't be done.

What about a very small facility on the site, so people who are bedridden and can't use a laptop, but only a mobile phone for short periods of time using WAP, can access a small part of this site to just type in hello sometimes - like Paula?

:-)

Mark. 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan 08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg 1200mg NAC 200mg. Doxyi Jan08.  75mg Roxyi Nov 26th 08

great ideas,

I was wondering if we could have the wording that pops up on the search engines refined somewhat so the money aspect isn't so prevalent?  just a thought

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Ruth, I too can't get any results that have anything to do with money.   What did you put in your google box.   Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006