Cpnhelp.org - Chlamydia Pneumoniae Treatment

Hi Lisa, Are you still on the antibiotic for the facial condition? Also when was the increase to NACi 1800 mg? Sure sound like NAC manifestations.  And just to let you know the first several months for me were challenging and that it is ok to take longer in each addition that one might like to enable you to have enough energy to continue to work. 

So glad for you that your brain fog is deminished currently.  Thanks for telling it like it is, no one here thinks you are whinning! 

 Louise, USA, Northern New England. CPni, Bb(Borrelia B., Lyme,) CFS.     Started CAPi 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

___________________________________________________________

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

Lisa - I totally understand your frustration and your difficulty in letting go of the person you were.  I have been down the very same path.  I also was a type A- try to help everyone, constantly on the go working mother of 2 kids.  It was very hard to let go and it took me a long time.  But I finally realized that when I pushed myself, I was no good to my family or anyone else.  I had been very active in our small church and my kids activites and working full time. The first thing that I had to give up was my job.  Then we changed churches because when I stopped running all the children's activites, no one volunteered to take over and there was nothing for my children.  That turned out to be a blessing because we ended up in a church that was more theologically sound and had a lot of great programs for all of us and it helped us all.  I stopped doing everything that didn't closely benefit me or my family.  This was hard to do, but necessary.  I still attended my children's activities when not flat in bed, but didn't volunteer for things that were strenuous.  If people didn't understand that I was sick, then I just dealt with it.  It was hard.  I even had extended family members that didn't understand why I mostly sat at family gatherings.  One realative even called me lazy which my kids overheard and made them very upset.  You are going to have to make some hard choices.  If possible, have your husband take over for some of the things if he can.  When my daughter was in a school activity that required parents to work in the football concession stand at times, my husband did it for me, because I couldn't stand that long.  Yes, I have had many tears over the loss of my former life and have withstood misunderstanding from many people and even have wondered how it affected my kids who are now both in their twenties and have issues in certain areas.  But they may have had those issues anyway. But on the positive side they are both hard workers and do well at their jobs because they had to help at home.  They know how to clean a house and cook a meal and are both willing to work hard because they had a lot of responsibility at home.  I believe that good things always come out of bad situations. You just have to give yourself permission to rest because you know that is the only way that you are going to heal.  You have to try to explain to people why but if they don't understand it or accept it, then you just deal with it and know in your heart that you are doing the best thing for your family and for yourself.  The first thing you have to do is accept it yourself.  Then you make the changes in your life that you have to.  My 72 year old mother works circles around me and that makes me feel very old and I hate it too, but it I have no control over that.  She is healthy and I am not - YET.    You are so blessed that you have found what is making you sick and a treatment to heal you now instead of being sick with no effective treatment for many years as many people on this site have.  Rejoice in that and then make plans to deal with the effects this treatment is going to have on your life.  You will have symptoms and overdoing will effect you.  The sooner you accept that, it will be easier for you to deal with it.  I have made the decision mentally that this treatment will heal me and I look down the road - long though it may be- and see myself well and a better and stronger person for what I have been through.  You WILL get your former self back, but a more improved version.  Good luck with Dr. I tomorrow.  Remember to take it slow.  Try taking just a few of the Doxyi and then wait to see how you react.  Since you are still working, you can't afford major reactions.  You may have delayed reactions.  My major mistake was not understanding that and thought that as long as I felt OK while taking the abxi I could continue taking it at the level that I was.  Feel free to ask as many questions as you need to here to let people guide you.  You have choices to go slower than what is prescribed by the doctor.  You have to listen to your body. That is a skill you will learn because you probably are not used to doing that.  Pushing through your symptoms are not an option on this treatment.  Rest and adjusting your lifestyle are necessary.  Now after all that - Rejoice that you have a great support system in this community and welcome to the Mad Cappers.  I stole that from the others on this site, I dont know who coined the term, but is a good description of the journey.

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, CPNi, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses 1500mg for 5 days 500 mg- 2 days, Azith 250 mg MWF,LDN,Armour Thyroid, Klonopin, Vasopressin

___________________________________________________________
Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses   1500mg- 5days, Azith 250 mg MWF,Armour Thyroid, Klonopin, Desmopressin, supplementsi.

Applause, applause! The Mad Cappers was Ruth - a good and funny description that speaks to all of us.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 46 pulses NC USA

___________________________________________________________

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

Hi Loise,   Yes I am still on that.  I tend to forget that it's very much like Doxyi and should think of myself on a CAPi protocol without knowing it.   Do you think after all these months it can still cause die-off?   What stuns me in the immediate decline from a busy day the day before, I would have thought die-off would take the weeks that it did Lyndia or is it that I've used up all the store cellular energy and there is nothing left the next day?    I started the additional 600 mg a day about a week ago.   Hard to think that a week later it's the reaction...I'm going to have to reset my brain to get my arms around tip toeing around changes for weeks to see if they affect anything.

Thank you for the feedback...I waiver from understanding one moment to being overwhelmed the next...sure is nice to have other that speak this language..my husband get's a blank look and condenses it down to "not feeling good these days".  

Lisa 

 

 

 

Positive Aug 07 -  Candida/EBVii/Mycoplasma Pnemoniae/CFSi/FM, low NK cells.   4 wks into NACi 1200 --added 600 mg one week ago/Nystatin/Solydn

___________________________________________________________
Aug 07 -  EBVii/Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 1200mg.  11/6 NAC/Doxyi 100mg 2x;Azith MWF

Whining? Hardly! You are here, talking to friends who've been there and lived through that, asking for reassurance. Rest when you need to and help your body recover. You are killing bacteria, you are dealing with their toxins flooding your system, you are pushing ever so hard to give your friend a lovely day and then you wonder why you feel like dog food???? You're entitled. (I just attended a three-day wedding and was wiped out afterward and I'm not talking about MSi reactions, just normal 'this is way too much wedding' reactions.) Sounds like things are going as expected. There's also the possibility you actually caught a cold... ;-)

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

___________________________________________________________

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

credit where credit is due... Mad CAPpers was also Jim K inspired, lol

hey Lynda, just a suggestion about reporting.  I find it difficult to read huge blocks of writing that aren't divided into more managable paragraphs.  Don't worry about correct English type paragraphs, just split up sentences when you change topic a bit.  Thanks

I don't know any whiners on this site.  We are all here to be supportive & to be supported when needed.

I can't totally relate to the Type A thing, I was basically slammed with a  sledge hammmer well over a year before I found this site.  That is ok as it is God's time & I think I was too sick & weak to start the protocol.  I was stronger when I started & was able to move things along a little quicker.

I just did my 2nd pulse - 1 - 375. mg of Metroi/Flagyl last nite.  Within a few hours my body was reacting.  I will post later my results.

Hang in there, NACi is a great bacteria killer.  I took my dose right up to 2.5 gms before I started the abxi.

Peace

Ruth

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metro

___________________________________________________________

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

 Lisa- it's exactly your reaction to NACi, to what should be a rather innocuous amino acid by the way, that supports your direction of treatment. People just don't react this way unless it's Cpni. Early into this it's really hard to tell what kicked off what. I used to find that actual improvements in my immunei functioning could trigger a massive die-off reaction from Cpn. Or getting a cold, and the gearing up of immune functioning, likewise could do so. Or a bunch of other things. 

As your load comes down it gets clearer what's causing what. But rest when you need, rearrange schedules if you must, and take good care of yourself.  

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

___________________________________________________________

 

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

Lisa, It may be helpful to add the name of that antibiotic to your signature and it's dosage amount etc. date of start and why. To add that to the mix of background for people to comment on your questions. 

For curiosity, has the facial situation improved?  I had a long term "pimple" just one inside my the rim of my nostril, could not be seen from outside.  Had had it for several years, never truely cleared itself.  Several weeks on Doxyi and one day I realized that it was gone.  Yes it could have been any bacteria, but it was sure tenacious and not your common come and go pimple.  So.....  I found it interesting that starting the antibiotic as you mentioned, last spring may have brought you back to the doctor sooner because you were feeling worse, what a blessing in disguise.  Louise

Louise, USA, Northern New England. CPni, Bb(Borrelia B., Lyme,) CFS.     Started CAPi 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

___________________________________________________________

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

Ruth- thanks for the reminder. I usually do break up into paragrahs more, but I think I was just on a roll and the subject seemed the same to me. My husband says I write like I talk, LOL. I tend to be long winded, I just struggle with knowing how to say what I want in a short version.

Sorry if it has caused difficulty for anyone.  I know the brain fog makes it difficult.

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses   500 mg- 5days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, Desmopressin, Zetia, suppleme

___________________________________________________________
Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses   1500mg- 5days, Azith 250 mg MWF,Armour Thyroid, Klonopin, Desmopressin, supplementsi.

forumnots, this is the way to look at it.... ****Lynda wrote: "I have made the decision mentally that this treatment will heal me and I look down the road - long though it may be- and see myself well and a better and stronger person for what I have been through. You WILL get your former self back, but a more improved version".**** ---------------------------------- Thanks Lynda, for these wise and comforting words. These are going up on my wall next to Mack's famous quote about being patient with long term treatment. -kk2 :)

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

___________________________________________________________

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Thank You Rica.  I feel very touched that you feel my words are worthy of putting on your wall.  Sometimes I sit here at this computer and search for a word that I want to use and then lately my feelings are just rushing out.  A good indication of some of my brain functioning finally coming back.  Yeah.  I missed my brain the most.

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses   500 mg- 5days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, Desmopressin, Zetia, suppleme

___________________________________________________________
Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses   1500mg- 5days, Azith 250 mg MWF,Armour Thyroid, Klonopin, Desmopressin, supplementsi.

Lisa, I've just increased my NACi to 2400mg and it hit me quite hard. All the symptoms you have described, which had calmed down for me, came back with real force, and I seem to be on a one week time delay too. So I'd say yes NAC effects.

I too used to be a 'doer', I never stopped. It nearly broke me to have to slow down so much, but I had to learn to do it. To push too hard only causes a slower recovery. I look at it this way - if I was caring for someone else I would work hard to make them take rest if that is what they needed, well you're looking after yourself, so take your own best advice. Rest when you need it and your recovery should be nearer, push and you push it further away.

Robert - MS for 16yrs. CAPi since Jul 07, NAC 2400mg, Doxyi 200mg daily, Azith 250 mg MWF.

___________________________________________________________

Robert - MSi for 16yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli 10th pulse.

Hi Lynda! Funny...for some reason I have been fortunate enough to have my mediocre posts be confused with Rica's edifyingly brilliant ones. Seems to be a trend, lol ;) Sorry, Rica.. Maybe my 'kk2' signature looks too much like 'katman'.[??]

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

___________________________________________________________

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

kk2, In all honesty, that's exactly what it is. When I first 'met' all of you, I often confused katman with kitkat kat=kat. Over time, of course, the two distinct personalities became clear. And then, there's ManyKatz... ;-)

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

___________________________________________________________

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

Kitkat- at least I feel better that I have not been the only one that has confused the names.  I think Mac is right that it is the "kat" part that we see.  At least everyone here understands the brain fog we deal with.  I actually was responding to what YOU said not what I thought Rica had said, even if I got the name wrong.  Your comment was not mediocre at all.  It really touched my heart. 

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses   500 mg- 5days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, Desmopressin, Zetia, suppleme

___________________________________________________________
Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses   1500mg- 5days, Azith 250 mg MWF,Armour Thyroid, Klonopin, Desmopressin, supplementsi.