Cpnhelp.org - Chlamydia Pneumoniae Treatment

Welcome Lesley, Read the list of supplementsi and begin NACi. If you have a reaction to NAC, you probably (in my mind - certainly) have CPni. In any case, a year to a year and a half of our protocol is not a dangerous thing to do and will probably cure you of many of those symptoms/diseasesi. There will be others along soon to cover ground that I haven't, but in any case, here you are in a unique place with some amazing people who may help you.

 

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 50 pulses NC USA

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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 52 pulses LDNi NC USA

Leslie- the collection of things you have we have (tongue in cheek) GFA syndrome: Generally Falling Aparti. Your list of things often have been associated with chronic infectionsi, of which Cpni is a big culprit. If it were me I'd say it warrants an "empirical trial" of a protocol like the CAPi described here, ie. start the protocol and see if you have response to the bacterial kill. As katman said, a lot of people start with NACi as it's over the counter and a harmless agent. As the only bacteria we know that it kills (it's an antioxidanti basically) is Cpn.

CAP for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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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

Hi Lesley, welcome to the madhouse. I started off with N-Acetyl Cysteine (NACi) which you can buy at Holland & Barrett. The capsules are 600mg and I began with one a day then slowly increased it until I was taking 4 a day, just to see what happened really.

It's pretty quick to do its job so you'll know within a few days whether you get the CPni reaction or not. Given that your medics have no idea, at least this gives you something to try and the support here is great.

Berkshire, UK. Diagnosed MSi Feb 4th 2008.

NAC first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
No GP/Neuroi support. Self medicating with assistance from D W.
Started Doxyi 100mg 20th April 2008

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

Hi Lesley,

Your history sounds remarkably like mine!

I began falling apart about the time I became a teenager with an outbreak of psoriasis, then, thyroiditis, endometriosis resulting in hysterectomy and the list goes on and on and on.

I have no doubt in my mind that I have an infection which is causing my chronic conditions. When your immunei system is in a weakened or damaged state, it oftentimes can be too sick to create the antibodies which help Drs diagnose certain conditions.

I was on another type of CAPi (the MPi) which works differently than the ones being used here and so I am starting over again with just the supplementsi first then will add the abxi back in. I got good results the first time but I think the MP was missing something I needed. This site didn't exist nor did I know there was more than one way to fight these infectionsi.

I'm glad you're here!

 

MP for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 12.5 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

When I change what I believe I change what I do

Hi Reenie

I know that on the MPi I had a couple of days when I felt really good and I thought boy this is what being normal and healthy feels like it was amazing but short lived. Im feeling a pulling sensation on the bladder and lower back ache at the moment, taking NACi 600 mg, Doxyi 100 mg daily and Flagyli pulse. Not feeling good Ive also been getting the palpatations of the heart. Ive ordered the Rifampicin but because Ive had to buy it privately its taking a long time to get here and Ive ordered and paid for meds in the past that haven't turned up so Im clutching at straws searching for something that works. What I dont understand is if these bugs can be so easily found under a dark field microscope why aren't other doctors looking for and finding them. I guess Im just impatient for answers. I was even on the website looking at prepayment funeral plans last night because the way my heart is playing up I wondered if Id got much longer left. I really am not down, just being realistic

Jean   

Jean, what you say about your heart is the same story with Paula.  We have had a emergency doc out to see Paula early last year before she went on the Wheldon CAPi, because she was having chest pains.  He couldn't find anything wrong.

We both think now that these pains she gets near her heart, are very similar to other pains she gets elsewhere when she hasn't been pacing enough and she is lacking in ATP energy.  Strangely enough, she very rarely gets these pains since going on the CAP and pacing better, but she mainly thinks it was the supplementsi that helped her initially, not the CAP itself.  Saying that, she hasn't started Flagyli yet.

Jean, are you taking many of the supplementsi recommended here?

I think palpitations are a symptom of secondary porphyriai - maybe some other more enlightened souls could confirm this?

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxi Apr08.

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UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

Welcome Jean,

you, by the grace of God, have stumbled onto the place you need to be.  I started treatment with the supplementsi last April & abxi in June of 07.  I have no regrets & I am not looking back!

Onward & upward!

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, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08

 Jean-UK- If you are getting heart palps on doxyi and flagyli you may be building up porphyrins. Tachycardia is one of the commonly reported symptoms of it. Make sure you are covering that with charcoal or cholestyramine and lots of water. You are also only on a half dose of doxy, so don't add the rifampin, a much more potent antichlamydial, until you have tolerated a full doxy dose. You are a bit early on starting with flagyl. Be careful about the porphyrin build up.

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxy, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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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

Lesley, there is a good chance that CPNi is the root of all your problems. You might also have mycoplasma pneumoniae, as well. If you are interested in being tested, I would go on the NACi for about 4 weeks, and then have chlamydia pneumoniae IgGi and IgM, and mycoplasma pneumoniae IgG and IgM drawn. The IgG being positive means you have a chronic infection, IgM means an acute infection.

edit to say that my ANA was negative, as well as my sedrate. and I have CPN as well as myco.  I think alot of us also have EBVi and CMV. 

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpn, myco, EBV, CMV. NAC 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli, tinii<

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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli, tinii<

Leslie, your story sounds v similar to quite a few of the women's on this site, mine included...  You will most probably find it very difficult to get a test in this country, and starting an empirical treatment is the best way forward.   When you start with the NACi, if you are lucky you will get a flu type reaction, sneezing, scatchy throat, maybe some nasal congestion, and that should confirm the Cpni is at the root of your problem   NAC kills the EBs (Elementary Bodies) which are the 'spreading' stage of Cpn, they are by the way the only stage of Cpn lifecycle that is visible through a microscope.   When they die they release a toxin in the body which makes you feel as if you had the flu.

Get back to me if you need some more information about finding a doctor who knows about Cpn in the UK. 

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

Hi Michele and Sharon,

I have started the NACi yesterday I tablet per day 600 mgs is that correct or should it be a higher dose, also not sure where I could get the blood tests done here in the U.K. I am in BUPA if that is any help, I have also emailed Dr. AW in Bolton who I used to see a few years ago as I know he is up on Lyme's so may be able to help with this, I would rather some kind of docter help me as I am on so many other drugs I don't want them to clash. I have also been taking somento as I thought it was Lymes disease should I carry on with this. Thanks lesley

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NACi, thyroxine, armour thyroid, prednisolone 10 mgs, dicolfenac, omeprazole, bisoprolo,meberverine, gliclazide,fluitcasone

A number of uk members see Dr AW and he is familiar with this protocol. Start with 600mg of NACi and see how you go, we eventually recommend 2400mg but you need to build up slowly to this. Expect flu like symptoms.

There is a list of supplementsi that knowledgeable people here recommend you take and you can find the list here. As a minimum we would recommend Vit D3 and B12.

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

Jean, you say you are taking NACi 600 mg, Doxyii 100 mg daily and Flagylii pulse. That seems a bit odd.

The Wheldon Protocol starts with NAC at 600mg a day, slowly increasing to 2400mg, then Doxy at 100mg per day and when well tolerated increased to 200mg per day.

Once you tolerate that well then you add Azith 3 times a week. You don't start the Flagyl pulses until 3 months in on the other drugs. You seem to be missing a bit.

You also need to be taking all the supplementsi along with it. Have you tried contacting DW? Not sure where you are in the UK but it might be an idea.

 

Berkshire, UK. Diagnosed MS Feb 4th 2008.

NAC first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
No GP/Neuroi support. Self medicating with assistance from D W.
Started Doxy 100mg 20th April 2008

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

Out of interest for others, where is AW and is he a Private practitioner or flexible NHS?

Berkshire, UK. Diagnosed MSi Feb 4th 2008.

NACi first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
No GP/Neuroi support. Self medicating with assistance from D W.
Started Doxyi 100mg 20th April 2008

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

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PLEASE use initials only for the precious few doctors we have in this country, we need to protect them from the powers-that-be, if they go we're all lost.

Pass on contact details by PM.

Thanks for co-operating

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.

 

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Quite correct. Jean has no sig, I didn't check her profile.

 

Berkshire, UK. Diagnosed MSi Feb 4th 2008.

NACi first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
No GP/Neuroi support. Self medicating with assistance from D W.
Started Doxyi 100mg 20th April 2008

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

Oh, my goodness, you mean I did it wrong?    I started with one month on the vitaminsi/adjuncts, added both doxyi and azith at the same time, then did a flagyli pulse at six weeks.  There's no requirement to delay flagyl pulses for some set period of time!

The idea is to pay attention to what your body is telling you.  Once you tolerate full doses of doxy and azith, you can add the flagyl pulse when you feel ready.  If you're having big reactions to the first two antibioticsi, wait until you tolerate them well before proceeding to pulses.  If, like many of us here, you do well on the first two, then go for the kill (flagyl or tinidazole).  I'd have gone mad waiting for three months to start flagyl and would have felt it a huge waste of time in my case. 

Wheldon Protocol for MSi, 06 Dec 2005...

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

Hi Mac.  I also heard recently about the 2-3 month wait between the bacteriastatics and bacteriacidals.  I thought this was because it may take this long for enough cpni to go cryptic for the Flagyli to be worthwhile.  (Or am I wrong?) It also says to wait this long at David Wheldoni's site.

UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxi Apr08.

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UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

Yes you did you naughty person.

I'm only following instructions straight from the horse's Wheldon's mouth. I'm a good girl I am. LOL. Doxyi 100 then Doxy 200 then Zithi and I have 2 months worth. Flagyli to be added later. He was concerned that I took it easy rather than dive in and make myself really sick.

You obviously have the constitution of an Ox. Are you sure you need to be on this

 

Berkshire, UK. Diagnosed MSi Feb 4th 2008.

NACi 600mg Feb 9th 2008. Increased to 2400mg Feb 19th plus all supplementsi.
No GP/Neuroi support. Self medicating with assistance from D W.
Started Doxy 100mg 20th April 2008

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

All I can say is I followed Dr. Wheldon's protocol paper to the letter at the time. (Now, he does update and tweak them, so it may be he is recommending a more cautious approach these days? I'll have to zip back there and look.) And no, I don't think I have the constitution of an ox. What I did and still do have is a desire to regain my health and I was brought up not to whine about what I can't control. My dad even sent me to second grade with the mumps! The teacher was appalled and sent me home, but Dad's rationale sticks with me to this day; you can stay home and be sick and learn nothing, or you can go to school sick and learn something. I don't advocate going to school sick, but the statement shows what kind of stuff my Dad was made of. A straight A student while driving a cab full-time to support himself through Northwestern University, one darned tough school. Me, I just plow through (like your proverbial ox). You take your medicine, you go about your business and you make something of your life while you let the meds do their job. Some days, this is easier said than done, but it's how I live.

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

This is lifted from David Wheldoni's pages, as of 22 April 2008. Methinks it did not read this way when I started treatment on 06 October 2005, and now accounts for negative reactions in a more direct way. JimK has advised people print it out or save it to a file, as DW does update these pages from time to time. And, everyone, please note, it says one might disregard going slowly when the disease is progressive. Mine surely seemed to be, with no remission of initial symptoms and a continual cascade of new symptoms, almost on a daily basis. A schedule of treatment. This is one schedule that strikes all stages of the organism's life-cycle. Other equally good schedules are possible. It is important that a committed care-giver (for instance, spouse, partner or parent) should ensure that medication is given, and swallowed, consistently.) Doxycycline 100mg orally once daily is taken with plenty of water.When this is well tolerated, Azithromycin 250mg orally, three times a week should be added. (Roxithromycin, 150mg twice daily, is an alternative.) When these are well tolerated, the dose of Doxycycline is increased to 200mg daily.The reason for this slow, step-wise introduction of antichlamydials is to minimize any reactions caused by bacterial die-off. These can be unpleasant. NOTE: in rapidly progressive MS it may be prudent to offset the benefits of stopping progression against the risk of reactions, giving full doses of azithromycin and doxicycline from the beginning. This combination is taken continuously. Two or three months into the treatment regimen three-weekly cycles of intermittent oral Metronidazolei are added. During the first cycle metronidazole is given only for the first day. When metronidazole is well tolerated the period of administration in each cycle is increased to five days. There is no reason for the intermittent use of metronidazole other than acceptability: if someone undergoing treatment is able to take longer cycles of metronidazole then it seems reasonable that they should do so. The dosage of metronidazole is 400mg three times a day. If it is suspected that a patient may have a heavy chlamydial load a smaller daily dose may be given initially.

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

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Hi Sarah

where was the chemist in France. Ive ordered Roxyi back in early marsh and it still hasn't arrived and Im keen to start on this. Im on Zithi MWF and 200 mg Doxyi and ivermectin at the moment and not feeling much benefit yet

Jean 

Yes, I'd seen the difference but it's definitely what I was told, ramp up the Doxyi first then add the Zithi. If it was just me I'd question it but my other half was there and says the same thing.

I suspect whichever way you go about the first two doesn't really matter as long as you can tolerate it. My MSi isn't fast moving so I can afford to go slow and steady, I can understand why you'd want to whack yours though.

My father was much like yours. I was shipped off to school with German Measles. I got as far as the front door before everyone ran off screaming and I was advised, through a slightly opened window, to leave immediately. LOL. 

Berkshire, UK. Diagnosed MS Feb 4th 2008.

NACi 600mg Feb 9th 2008. Increased to 2400mg Feb 19th plus all supplementsi.
No GP/Neuroi support. Self medicating with assistance from D W.
Started Doxy 100mg 20th April 2008

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

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Andesine, And I looked like a little seven year old chipmunk! The teacher, a Jackie Kennedy lookalike, was appalled, truly. She was beet red and shaking when she escorted me to the principal's office and demanded he call my father immediately. I spent the rest of the day at my father's business, in a corner, reading my books and doing my homework. Perhaps you and I are related?!?

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

Yikes, you two! Well, I'm sure this was your parents' doing as you so proclaimed, to send you off to school with highly contagious illnesses.  

I, OTOH, stayed home sick in bed, most of my school days, sick with repeated bouts of tonsillitis.  I was just simply too sick to leave my bed although graduated top in my class.  My teachers would threaten to leave me behind year after year but somehow I managed to always stay on top of things even though I was never there!  

In fact, I even graduated a year ahead of my class.   

 

MP for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 12.5 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

When I change what I believe I change what I do

LOL! To be fair to my father, I have to be, he died many years ago and I don't want to get haunted, he swore that when he sent me off I looked normal and was just saying I didn't feel well. By the time I arrived at school which was a 5 minute walk I was covered in spots.

Sending me home was a great idea as both parents had gone to work so I went to the lady who minded me after school each afternoon. She screamed and shut the door in my face so I went home and sat in the garden for 7 hours. When my Mum got back and saw the state of me she went ballistic.

After phoning the Doctor she went round to my minder and gave her several pieces of her mind and my poor Dad got it in the neck for years afterwards. If I ever said I didn't feel well after that he'd send me straight back to bed.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 600mg Feb 9th. Increased to 2400mg Feb 19th plus all supplementsi.
No GP/Neuroi support. Self medicating with assistance from David Wheldoni.
Started Doxyi 100mg 20th April 200

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008