Well, it ended up in a forum post, did you intend it to be a blog? Anyway, good to have you here. The site is confusing and we are hoping to remedy it eventually. 

One of the things about Cpni [1] is that it parasitizes immunei [11] cells, rendering them less effective. A lot of us have improved significantly in immune function since being on the CAPi [12] and are able to fight off viruses we could not before. Some have benefited from conjoint treatment with antivirals also. I hope you can convince your doctor to get you on the whole CAP as monotherapy (single antibiotic) won't do it and you'll be left with other Cpn forms that will take over again once the antibiotic stops. 

CAP for Cpn 11/04. Dx: 25yrs CFSi [13] & FMSi [14]. Protocol: 200mg Doxyi [3], 300mg Roxithromycin, Tinii [15] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [12] for Cpni [1] 11/04. Dx: 25yrs CFSi [13] & FMSi [14]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [15] 1000mg/day pulses; Vit D2000 units, T4 & T3

Hi Timaca, Good to see you here.I posted on the HHV6 site a few times. Jim is right about Cpni [1] and the immunei [11] cells. When I first began treatment my white cell count was very low. It has been gradually coming up to the low end of normal since treatment with the CAPi [12].Most interesting, my energy and stamina are at normal levels and I feel no sign of the symptoms from my viral infectionsi [6](HHV6 and EBVi [8]). Jim is also right about the need to clobber Cpn in all it's life stages in order to really get rid of it. That takes a combination of Abxi [4]. I recently began taking 6 tabs of 1000mg Pyruvate one hour before my antibiotics.This seems to have softened the die off effect and given me more energy. Also, for the viruses I began taking Cranberry extract, Fucoidan and Lysine. I've been taking Lysine for a while actually. Virus flareups are usually signaled by joint pain for me but it is noticeably absent and has been for a long time. Hope you can get the full CAP going. I know this site is chock full of information but it is worth chipping away at to gain a good understanding of the big picture. Raven CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFSi [13]. Also HHV6 and EBV

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Feeling 98% well and going for 100! Still testing + for Cpni [1] since June '08.CAPi [12] since 8-05 for Cpn and Mycoplasma P. for MSi [17] and/or CFSi [13]. Also EBVi [8] and HHV6 NACi [18], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [19] and Methylation supplementsi [20]

Hi Timaca, Welcome... Many of us here believe that there is nothing wrong with our immunei [11] systems except maybe exhaustion, what is wrong with us is that we have a stealth infection (or two) maybe viral which we can do little about (our immune systems are best at keeping viral infectionsi [6] in check) maybe bacterial, which we can do something about.

Because of the problems of Cpni [1] only a Combined Antibiotic Protocol will eradicate it. If you have not already reach the 'Getting Started' module (Blue Tab at the top of the page).

 

Michèle (UK) GFAi [21]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [23] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [21]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [23] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Hello Jim~

Thanks for the welcome.  I thought a forum topic would be better than a blog since my impression of a blog was that it is a story of one person's journey, and not so much for discussion.  I certainly can use input from others! 

Yes, I'm aware that Cpn can affect the immunei [11] system.  Unfortunately, so can HHV-6.  See:

http://www.hhv-6foundation.org/hhv6_induced.htm [25]

I do know people that had HHV-6 infection (chronic) and they did not have Cpn, yet they could not get well until until the HHV-6 was treated.  I unfortunately, seem to have both infectionsi [6].  We've knocked down some of the viruses (HHV-6, EBVi [8] and VZV) and now need to battle the Cpn, then the HSV1.

I do hope my doctor will be open to trying Dr. Stratton's protocol should his not work.   I did give him some articles.   My guess is that he has never gotten articles from a patient before, as he is at a well known University Medical Center, and has quite the reputation.  But, he graciously glanced at them in my presence, and maybe (hopefully) he will read them when he has the time.   I will be seeing him at the HHV-6 conference, and then shortly thereafter for an appt, so we will go from there.   I am just so grateful that he recognizes the Cpn as a problem and is willing to treat that along with the viruses.   He is a wonderful doctor, so I do respect his opinion.   Obviously we are all learning....and he is one of the doctors breaking new ground in the medical field, so I am lucky that he is my doctor (very lucky)

Jim~ I noticed you've been on the CAPi [12] since 2004.  Have you made progress?

Raven~  Nice to hear that your energy and stamina levels are normal!  I hope mine can get there too!

What does the brown "i" mean? 

What does EDSSi [23] stand for?   I'm assuming the higher numbers mean more ill...

Thanks all.....you are awesome.

Best, Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [8], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [4] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [3] bid for Cpn and acyclovir for viruses.

Timaca, the brown i question is answered in the Getting started' module (Blue tab) 'Getting to know the website' [26] page and EDSSi [23] is a measure of disability in MS.   If you google EDSS scale you will see what the scale represents.

Michèle (UK) GFAi [21]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [21]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [23] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

 Timaca- I am familiar with the HHV-6 problems, and you are quite right that it is difficult to get well if you have it without it being more specifically treated. A number of the doctors using the CAPi [12] for Cpni [1] also use antivirals for those patients who are co-infected. We need all the help that, well, that we need! But of course if your immunei [11] system is parasitized by Cpn, that sucks too!

Yes I am much better. You can read my latest blog post by clicking on my name in this comment and going to it from my profile page, and from the patient story. It's has taken me a long time, but I'm getting towards the 80% improvement mark. Given that I was on the verge of being bedridden when I started, that's quite an improvement.

CAP for Cpn 11/04. Dx: 25yrs CFSi [13] & FMSi [14]. Protocol: 200mg Doxyi [3], 300mg Roxithromycin, Tinii [15] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [12] for Cpni [1] 11/04. Dx: 25yrs CFSi [13] & FMSi [14]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [15] 1000mg/day pulses; Vit D2000 units, T4 & T3

Welcome Timaca,

I do hope that you are able to get your doc on board as combined abxi [4] is the only known way the CPni [1] will be eradicated.  It is a nasty beast & can be debilitating, I, like many others here, only know this tooo well.

I started one abxi [28] at a time & added the others as I tolerated them.  I started the abx doxyi [3] in June of last year & my first flagyli [9] pulse last August was 1 day, 1 250 mg pill.  I just finished pulse #10 & I am not up to the full dose yet!

Slow & steady wins the race & also expect the unexpected.

CFIDSi [29]/ME 26yrs, FMSi [14], IBSi [30], EBVi [8], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [18] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi [29]/ME 32 yrs, FMSi [14], IBSi [30], EBVi [8], CMV, Cpni [1], 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

Welcome Timaca...

With regard to your statement:

"I do hope my doctor will be open to trying Dr. Stratton's protocol should his not work. "

as you can read from all of the input on this site.. IT WON'T WORK.. the chlamydia pneumoniae bacteria has three life forms and the ONLY way to eradicate it from your body is with the COMBINATION ABXi [4]. 

Your doctor may be renown, but unless he has the openmindedness and/or knowledge/experience in treating CPNi [1] with proven protocolsi [32] it will just go into hiding in your body. 

That may be the difficult part of working with an infectious disease  doc..... I consulted with one but he wanted no part of, nor did he believe" (understand; i.e., ego/mindblock, didn't want to take new info from a patient) this protocol.  I am fortunate enough to have a very open-minded, willing GP to treat me.

Again, welcome... there's much information here from those of us who have been in the trenches (some longer than others!) 

Be well and blessed,

Jeanneroz ~CPN diagnosed and started protocol  4/2007, also have  HHV6, EBVi [8].  CFIDSi [29]/FM diagnosed: 6/07; Protocol:  200 mg/doxyi [3] daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. supplementsi [20]

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JeanneRoz~CPNi [1] diagnosed & started protocol 4/2007, also HHV6, EBVi [8]. CFIDSi [29]/FM diagnosed: 6/07; 100mg/doxyi [3]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [15] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Before accepting his treatment which may be a single abxi [4], see if you can gently persuade him to at least talk to Stratton. If he is as good a Doc as you say he is, and he's into research then he ought to be willing to get new info on board.

As to EDSSi [23], yes, I wondered the same thing when I first saw the term. I found this page [33] about it which is nice and clear. 

Berkshire, UK. Diagnosed RRMSi [22] Feb 4th 2008.

NACi [18] 2400mg. All supplementsi [20]. Doxyi [3] 200mg. Zithi [34] 250mg M/W/F.
No GP/Neuroi [35] support. Self medicating with help from David Wheldoni [36].
Started CAPi [12] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [22] Feb 4th 2008.

NACi [18] 2400mg. All supps. Doxyi [3] 200mg. Zithi [34] 250mg. Metroi [9] 400mg.
No GP/Neuroi [35] support. Self medicating with help from David Wheldoni [36].
Started CAPi [12] 20th April 2008. First pulse June 2008

Thanks for everyone's comments.

Jim, I'm glad to know that you've improved so much.  I hope you get 100% well.

Michele~ I did look at the Getting Started info and didn't see anything about the brown i.   I'm sure it's there as you said, but it wasn't easily spotted by me...and I was looking for it.   However, I did click on an i and saw that it led to a nice dictionary.   What a nice touch!  (OK....I just looked again for the 3rd time and spotted it....perhaps you could put "brown i" in bold letters to make it more apparent to dummies like me? )

 Unfortunately, I stopped the doxyi [3] today after just 2 days on it.   I had severe abdominal pain/cramping last night.   I had an 11 month bout of C. difficile in 2006 and sure don't want that again.   So, just to be safe, I stopped the doxy.   I will try it again in several days and see what happens.  Hopefully, my GI tract will handle it (yes, I take it with food).   I was able to take doxy prior to C. diff....

 Thanks for everyone's support.

Best,

Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [8], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [4] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [3] bid for Cpn and acyclovir for viruses.

Timaca, You're the perfect person to ask about the definitions. If you spot words missing definitions (EDSSi [23] comes to mind), could you send me a private message here and I'll edit them in. New people notice what's missing; the old birds tend to shrug our shoulders and either look it up on Wikipedia or ignore it. Your fresh eyes will help.

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

Re brown 'i':  No sooner said...

Michèle (UK) GFAi [21]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [23] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [21]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [23] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

MacKintosh~   Yes, I'll alert you to words that might need a definition.  

Michele~   Thanks for the "brown"  "brown i"   It is much more apparent now to people like me. 

You guys (or girls) are the best!

Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [8], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [4] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [3] bid for Cpn and acyclovir for viruses.

AH, but on my format the 'i' is blue. I guess it depends on what page setup format you choose for yourself. I'm thinking brown is on the default setup.

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