MediTest
27 Apr 2018
Author
Jim K
Title

Cpn/Lyme Co-Infections: can anyone write up a page?

Body

We have a lot of Lyme's folks who have discovered that they are co-infected with Cpn and are seeking treatment help. There are some important differences in treating Cpn, the secondary porphyria for example and how to differentiate it from herx, the energy parasite nature of Cpn, as well as Lyme's problems less common in Cpn infections such as Babesia and so on. We need a page that addresses these from someone who has been there and knows the treatment of both. Any volunteers?

Comments

Wow, Keebler, Nothing like jumping in with both feet as a new poster!

After reading a little on your LymeNet boards, I really respect what some of you have gone through to get to this point. Hopefully, we can help the cpn co-infected among you and get you a little bit farther down the path.

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

Hi Keebler.  I was blessed to be dx with CPn, shortly after I found found this site and then was subsequently, within a month Dx, tested  Positive for Bb (after a month on high dose doxy, like an abx challenge test situation, and also negative for the other tick born illnesses (not tested for bartonella, but symptoms not similiar to that list) I have only been on the Wheldon CAP no other previous Abx treatment plans. 

I realized early on that the CAP had good potential to reach the various forms of both CPn and Bb (Borrelia Burgdorferi, the lyme Spirocete).  I have talked extensively with people in the Borellia and TBI( tick born illnesses)  comminityand found that the experience strength and hope offered here placed me in a better, stronger mindset.  I tried to share info posted my complete protocol to our local group and found that there was not much interest locally.  People had been on mono therapy with most of these abx and had relapsed.  They could not get their mind to wrap around the concepts that are presented here. 

After talking with my MD last week, I realize that the Lyme Community is finally beginning to catch up with the CAP concept so that is a positive development. 

My understanding is that I will be on CAP of one variety or another for several more years full time.  That is fine with me as I am getting a life back.

My hope is that you find our community useful and get stronger and improvement, enough over time to convince those that you know in the Lyme community to consider this approach.  I for one do not have that desire to debate and spend my time explaining all the details and then be dismissed as I have in this past year.

These CAP approaches outlined here are directive and long term courses of moderate applications of Abx based on good science.  Not the aggressive, for most situations (with a few more critical situations being the exceptions) that many LLMD juggle.  And there is no consistency amongst LLMDs.   One member here recently said that his LLMD said that our CAP was too wimpy for Bb.  I was given the heads up by DW that the long slow course over a good length of time has a good chance of reaching goal.  

So I perserve.  And try to live each day in the moment, as I am actually improving and deal with the lyme controversies by realizing that many folks certainly do have it and don't and won't know it.  And if they would get on these CAPs and do dilligence with them there is a good change that they will get weller. 

So with the disagreements within the LLMD treatment community I wonder if there can be any standard answers for folks with these MDs.  As my MD pointed out to me there are many protocols.  The one I a on is one.

Louise

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

People with lyme seem, in my experience, to be much more open to the idea of co-infections generally because many already know that they have multi-contributors to their chronic illness and whenever I've mentioned Cpn and the CAP they are interested and want more info. The CAP is fairly well accepted because it's in line with Dr Burrascano's Combined Antibiotic approach to get at Bb in it's different phases but the drawback is that he recommends switching from one combination to another fairly quickly when progress seems slow, whereas here many of us have found that staying with the protocol through thick and thin has been the best way forward.......making changes and additions once a certain level of recovery is underway.

Not that it's easy for some of us as the lyme toxins along with the Cpn porphyria can be tricky to deal with and I, for one,  had to stop treatment for a while when it made me very ill and neither my LLMD or any other doctor could work out exactly what was happening.  Now though, in my third year of treatment I can say that it probably isn't too helpful to try and work out precisely what it is that is making you feel so bad at any particular time but just go ahead and treat for everything all the time....endotoxin, neurotoxins, herx and porphyria will all be addressed by the supplements recommended with CAP so be sure to take them all and gradually you'll be able to work out just what you need when you need it.  

The best advice is to start slowly and if you run into trouble slow down even more, gradually get up to the full CAP at a pace that suits you, some LLMDs say that pushing through a herx is what's needed but if you have Cpn as well then that can be hard as well as dangerous and it might make you give up and never come back.

The different diet recommendations for lyme and porphyria puzzled me a bit too at first,  as Keebler says people have varying degrees of success when trying to follow someone else's advice so this is an area where everyone needs to experiment, don't take the recommendations too seriously if they conflict with what you already know to work or not work for you. I have had great success on the CAP without following the high carb diet, listening to your body works best so only change to this if it makes you feel good.

I am very, very glad that I stuck with the CAP

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

What was said to me by my local lyme community facillitator, a past member of the original workteam that wrote the original Dr B. protocol (did the secretarial work because of past medical background and being a patient) was that everyone has CPn.  That person had little interest in understanding it as an important entity in itself or the specifics of the science.   Also little linterest in the specifics of this CAP.  And was also not helpful in answering my specific questions regarding the specifics of Abx treatment of Lyme as they understood it.  Said it was best to leave all that to LLMD.   I knew she know specifics and she was reticent to share anything specific with me, an old co-worker.   That was a year ago much can change in a short period of time.  I am speaking from my corner of the US.  The UK may be a more open place in many ways.

I did not follow the high carb diet. I did add small amounts of carb into my moderate carb diet and that helped as I experienced increased porphoria in my early treatment but getting them out of my system with a well applied round of Cholestyramine did much more for me personally.

I believe that if I had followed a very agressive LLMD approach I would have been much sicker than I was already sick.  the pace of CAP suites me well with my known bacterial infections. (and can work for may unknow as well, not all but many).

Tomorrow evening I will be meeting with these Lyme folks from my recent past and will see how they view my progress on this CAP. 

The biggest thing for me in moving away from following that community  is that they were of little help when I needed help and when I tried to share what I had found here that was helpful there were no questions of interest after I outlined the CAP in detail on the elist. It was like I was talking to the wall.   Maybe things will have changed.  

So many of them are ultra dependent on the perspective of their particular LLMD (which is most often a self taught situation and there are as many perspectives as there are LLMDS) for better or worse and seem not to want to understand the disease concepts themselves.   To my thinking this makes minor deities of these LLMDs.   Just my humble opion.

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Elinor and Louise, thanks for sharing your well-phrased thoughts and encouragement for all who may find this thread.  It is so good to hear of people who are doing better.  

 

As someone whose life is touched by both Cpn and Lyme infection, I want to go on record as opposing this idea.  There are quite a few sites to inform, educate, and support those infected by Borrelia, but so far as I know, this is the only site to help people in the treatment of Cpn infection.  And helping people with Cpn infection and treatment is the purpose of this site.  It's a generous thought (and one I appreciate) to want to provide "one-stop-shopping" for those who are co-infected, but I project that it could cause alot of confusion and become cumbersome.  I think it's enough that Lyme-related subjects come up here and there in the threads, and that they are discussed freely.  We don't want a horde of folks who need help with Lyme issues to expect that they might find Lyme answers here.  No doubt, I think if Lyme were our focus here, we could do a bang-up job, just because we are so (<wonderful, exceptional, even brilliant>).  So basically, I'm encouraging that we discuss it when it comes up, but that we don't try to minister to the need in such a way that we are also viewed as something of a Lymish board.  I say OK to the status quo.

P.S.:  The information they need will make its way around on the existing Lyme sites.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

I agree with Joyce on this one.

CFIDS/ME 26yrs, FMS, IBS, EBV, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 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

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Joyce- here was my intention: not to provide one stop shopping or information about Lyme's in any way.

Simply to provide one page that lists the things one should know if you have co-infection. For example: that high-dose abx treatment common for Lyme's will generate porphyria with an example of these symptoms; that monotherapy will not get both bugs (probably won't get even the Borrelia, but that's another story); etc.

I'm looking for a list here, not a detailed primer on Lyme's. Keebler's presentation and links is too much detail for what I have in mind, I agree on that. It be presumptuous on our part for the reasons he stated: "Treating lyme / TBI really is a sub-specialty.  It takes an enormous amount of study and a great deal of time to truly assess patients and determine the best course of treatment."

This needs to come from someone here who has experience treating both, and needs to be as simple, clear and straightforward as what Michele has put together for the Getting Started--- except only one page. We shouldn't make curious Lyme's patients have to learn everything there is to know about Cpn in order to figure out what's different for them if they have a co-infection with Cpn. They are just as brain foggled as anyone else coming here. 

One page, a list of important differences, perhaps with links to our pages that detail those processes in Cpn. THis might be better put together by a couple of co-infected folks with experience here through PM. Does this make more sense? 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

Okay, I gotcha.  Can't volunteer, though, I'm still low on the learning curve of trying to figure out whether or not the treatments Steve is receiving are affecting just Cpn, just Borrelia, or both (throw in some Mpn too), causing porphyria, LPS dump, or HSP dump.  Trying to decipher the viral activity is a complete enigma.  Arrrrgh!

The ironic thing about this is that so many more people are chronic Cpners, yet there are so few aware of it and seeking treatment.  Chronic Lymies are far fewer, but so many more are seeking treatment and information.  Now only a fraction of those are Cpners, and only a fraction of that fraction are aware of it, but they are still probably a horde compared to our few numbers of Cpners in the know.  I've been smushed and knocked down by a sporting event crowd before....makes me a little nervous.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Jim, I can't do the page because I have little knowledge of Lyme, but I do have one foot in each pond, so to speak, at the moment. In the past week, I've encountered four Lyme patients who are lucky (?) enough to have learned recently that they're co-infected with cpn. I've been flat-out astonished at the high doses of abx they take, though their treatment (often, different meds) isn't the same as ours by a long shot. We've picked up at least half a dozen, from what I can see, this week, and there's no way to tell how many from LymeNet have come browsing, as well.

Keebler is really knowledgeable on Lyme, but hasn't the facility with our site yet to do the comparison stuff. One page, written by someone here who knows both diseases a bit, would probably go a long way to answer Lyme patients' questions up front.

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

 Mac- Thanks, that is exactly what I have in mind. We do have folks like Daisy and Joyce, Louise and Elinor who have been co-treating and know a bit of the ins and outs. What I have in mind is simple, simple, simple, really just an orienting page with the differences between these treatments and how people have handled them, and some links. Maybe this is the place to simply collect a list that can be turned into a page. I'd start with these:

  • That you can't treat serially with different meds, they have to be concurrent (at least some of the time such as pulses) to erradicate Cpn. Probably Lyme as well, but they'll likely know that by now.
  • That "pulses" don't mean alternating with flagyl but that it is added for a period concurrently.
    That porphyria is a distinct feature of Cpn and high-dose treatment common in Lyme's can make porphyria much, much worse-- and it may explain people on high-dose Lyme's treatment who get worse and worse from "herx," rather than herx and get better as would be expected with Borrelia alone, are accumulating porphyrins. Elinor may be our "accidental expert" on this!
  • That Cpn is rather uniquely killed in on of it's forms (EB's) by NAC and reaction to NAC is considered a good indicator that Cpn load is high. As far as we know NAC does nothing to borrelia or any other bacterium, so reaction to it is useful to signal Cpn infection.
  • Many Lyme's doc's have found that treating borrelia requires higher doses of antibiotics and switching meds to defeat adaptation by the bug. This has to be leavened or worked up to carefully (not necessarily slowly as Daisy's aggressive treatment of her husband shows) when Cpn load is high, and porphyria measures put in place.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

I went to a local Lyme Informational Talk given by a well informed MD.two evenings ago.

  The talk started with the statement that Lyme is neither possessive nor plural, therefore Lymes is incorrect usage. 

It is a very common mistake but drives some folks with Tick Born Illnesses to distraction!  FYI.

Louise

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulsees. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I think it is a bit about how you see your order of infection.   I personally see Borrelia Burgdorfer, Bb ( Lyme Disease bacteria) as a co-infection of my Chlamydia Pneumoniae, CPn. 

I believe that I had the CPn first based on my symptoms and pre-existing (thought in a much milder form) my visit to a known area endemic Lyme and spending a lot of time in the great outdoors there, really beautiful. 

My sense is that they see CPn as less serious than Bb.  And with the Kill level of anti-replicants they are really laid low from the treatment as was my early experience.   

I asked DW a few questions last fall and he kindly answered me in his lovely round about way.  I personally am believing that for me, if I follow these CAP suggestions and I continue treatment LONG ENOUGH and CONTINUOUSLY I have a good change of getting them both with our turtle walk protocol.

So I don't feel that I can really talk to the Bb folks because they have a huge mindset and many many theories, from many, many providers.

Perhaps there could be a page with the specifics of this particular intracellular organisms responses to ABX CAP Therapy and why it is a moderate approach in general and how the specific fall out of treatment is coped with. 

It all comes down to education, so much to take in.  And Ideas have to be rearranged and that is hard for folks that have been sick and treating for years on and off abx with the slam bam approach.

For me, I found that the level of fear and anxiety within that community was detrimental to my healing and peace of mind.   I am choosing to follow this way at this time.   I just go my rx for clarithromycin, will see if my insurance will pay for long term use of it.  May change to if from Roxi but may not, Roxi has been very good for me in combo with Doxy and Tini pulses.  I am getting a life back on this moderate less agressive approach. And not many of those Lyme Support folks seem very interested in my CPn as being so very significant.  

Maybe in another year or so I can get on the soap box and shout to the Lyme masses but I am just one being on the planet, so thankful for finding this site just the way it is, and following this CAP because it seem like the middle way.

So I doubt that I could write a good page, this goround of treatment is my first treatment of symptoms that had been spiraling downward for years.  I many ways I was luck, no depression meds, no trecks to numbers of MDs, just alternative treatments and nutritional approaches that helped for many years and then one day nothing helped any more.  I crumped for about 2 years and then found FFC and the DX CPn and subsequent to starting CPn abx I tested postive for Bb.    So I am atypical and cannot really talk to the typical.   I understand more medical information than most due to my background so I guess that is why I didn't chase that route.  In the end that was a good thing and I have found that I am getting a life back on the approach.   Will I be completely healed?  Who can say, I am however appreciative in the day and that is all that any of us really have.

I personally have a hard time supporting how many providers that are working with folks with Bb.   This kind of goes back to a post Joyce made in the last month or so about those who may be coming here, discouraged with the changes in the healthcare system yet still wanting the same type of no-involvment in the ins and outs of their own care.  

I guess this reply has gone on long enough.  I guess I need to say that I don't feel up on Bb treatment enough to be able to take the Bb folk on and banter with their questions.  

How about a compare and contast set up so that folks could see the lifelong need for NAC as a preventative for CPn. The strong need for daily probiotics to prevent those problem.  A listing of the the Antibiotics that are generally considered effective for both CPn and Bb as stated in the general literature.  And then a link to some of the new pages that Michele has put up.   A bit like one stop shopping for the similarities and differences.

Just my thoughts and opinions.

Louise

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

In fairness to those in the Lyme community, they've been at it longer and have spent more time in ignorance than the Cpn community. By the time any substantive understanding of the pleomorphic nature of certain bacterium had manifested, numerous doctors had been spending numerous years helping numerous people attack shadows. Much of what remains in the Lyme world is equal parts decades of lore and science, whereas by the time Drs. Stratton, Wheldon, et al., were proposing and refining CAP, there was a pretty clear understanding that multiple forms required multiple drugs.

I personally feel that much of what goes on in Lyme treatment borders on the barbaric, and that when the correct cocktail of abx is (has been?) discovered people will get very well with much more gentle measures. The best tool isn't always the biggest tool, but sometimes a pipe wrench is the only hammer you have available.

I would respectfully disagree with the characterization of Bb as a co-infection, however. If 70% of the population has significant titers of Cpn by age 50, and the only proven way of getting Bb is from the bite of a tick (yes I'm well aware of the wide range of theories regarding Lyme innoculation..I said 'proven') then clearly one is the exception and one is the norm. Put another way, Bb makes it more likely get get Cpn, but not vice versa.

The question of which is more harmful is another question altogether, although at some point becomes irrelevant. Chronic infection produces chronic illness, and most chronic infections remain chronic due to a pleomorphic nature, and must be cured by addressing them in all forms. For this CAP was created, and CAP in some form will be the cure of most, if not all, chronic infections...whether Bb, Cpn, or 20 others.

Which presents an interesting thought. Is the real value of Cpnhelp.org its focus on Cpn, or its focus on CAP? Cpn makes me sick and CAP makes me well, so I'd argue that it is the latter, and perhaps this is at the core of the issue. As more folks in the Lyme community become aware that some form of CAP is the correct answer for dealing with their condition, you will find increasing cross pollination.

Maybe there needs to be two sites, or at least two subsites. One that focuses on awareness of Cpn and its role in chronic disease, and one focusing on CAP as the solution to Cpn and other pleomorphic pathogens.

<**ducking and running for the door**>

Tennessee, USA - Bb positive w/neuro involvement, suspected CPn
Doxy/Samento for Bb 2005-2007
Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F

Tennessee, USA - Bb positive w/neuro involvement, suspected CPnDoxy/Samento for Bb 2005-2007Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metro pulses @ 3x500mg

Bob,  Very thought-full and well written, but I disagree.  If there were two sites, one for Cpn info/ed and one for the CAP, there would be a flood of users on the CAP site and a dearth of users on the Cpn site.  The Cpn site would mostly be frequented by folks who just find it interesting or who take a very "hands-on" approach in treating their illnesses.  While that characterizes many of the users here now, I project that in the future, that proportion will be shrinking as more and more Cpners find us.  The great crowd of newcomers predictably will just want to find out what it takes to get better without becoming something of a Cpn "expert."

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

You make a good point Bob. No need to duck out the door! IMHO this is very much a CAP site rather than a Cpn site. There are quite a few people here who only have suspected Cpn involvement, but the reason they are here is because they are pursuing a CAP. Conversely there are very few people here (if any) who are treating Cpn with any means other than a CAP. Ideally all Cpn treatments would be welcomed/discussed here but I know that logistically (and perhaps politically) thats not possible.

CFS. Started CAP 03-07. Currently: Roxi 600mg + Doxy 200mg + Rifamp 300mg . Tini pulses 1000mg. Sauna QOD. D 8000IU. Niacin 3 x 500mg. Mel 3mg.

Hunter: Don't think - experiment

I'm not necessarily an advocate of having two sites, for many reasons....but....I think it is clear that the focus of the site will inevitably move toward CAP, somewhat to the detriment of its initial Cpn focus. It might, in essence, become more like the MP site that focuses on the cure more than the cause.

At some level that is unfortunate, because there is no other site that provides the unique perspective of Cpn's role in chronic illness, and you don't want to lose that.

On the other hand, what causes MS? Cpn? Yeah. Bb? Probably. Heavy metals? Possibly. Other things we haven't yet discovered? Definitely. At the end of the day, do we care? No, not really. At least not once we find the cure that fits our cause.

There is a significant orthogonality that is inevitable, and the challenge becomes addressing all without diminishing any. In the engineering world we call that 'impossible'.

My prediction is that this site, if allowed, will evolve toward being CAP specific, with undertones of Cpn and MS. The question is whether the wonderful folks in this community are willing to allow that. To do so will dramatically expand the ranks and the exposure, and hopefully the helped, but will do so at the expense of a narrow focus and a quaint intimacy.

Are you willing?

Tennessee, USA - Bb positive w/neuro involvement, suspected CPn
Doxy/Samento for Bb 2005-2007
Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F

Tennessee, USA - Bb positive w/neuro involvement, suspected CPnDoxy/Samento for Bb 2005-2007Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metro pulses @ 3x500mg

This site is already a CAP site.  Few here really know what organisms they harbor.  We may think we do, but to what expense and length are folks willing to go to prove a point?   Those that can extrapolate that CAP will catch may stains of intracellular bacteria will use the information wisely.   That is the point of sharing protocols wisely and making no claims and not giving advice to those not willing to read some of the basic information themselves.  

There are full successed, partial success, and some outright failures and that is true for all forms of healing.   The site cannot help everyone, but we each have a shot at helping ourselves.  That is a huge hope as you are going downward in the spiral of disfunction and disability.  

I see co-infection to mean simply both existing at the same time.  Which came first or is the worst is up for debate and not worth debating.  For me I know that CPn has been around longer for me, yet it really does not matter.

I like the hopefulness of this community, as apposed to the fearfulness I feel in that other community, both on line and in support group rooms.  And hope is the more powerful emotion in my estimation.   it will be wonderful when CAPs of moderate intensity and lengthy duration become the norm there so that people can actually stay on them.  How may years might that take, any guesses BobO. 

Glad to have such a knowledgable  and open Lyme guy to keep us on our toes here!

Louise

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I couldn't agree more Louise, especially regarding the difference in the sense of hopefulness. I think that Lyme in general, and Bb in specific, suffer from the decades of wandering having created a sense of abstract fear. This has been perpetuated by conspiracy theories and ignorance and desperation. As the light gets turned on, this will pass.

I was struck by the simplicity of Dr. Marshall's explanation of how MP attacks CWD pathogens. While it may be overly simplistic, incomplete, or just plain wrong...yet to be determined...I saw in clear terms that the problem isn't so much crafty, outrangeously hard to kill bugs, as much as it was that we just weren't using the right combinations of abx. And further, that DNA studies of the bugs we intend to kill would eventually yield very specific therapies that kill at much lower concentrations. Stratton/Wheldon CAP seems to be an example of exactly that reality manifested for Cpn.

It reminds me of computer viruses and malware. The toughest ones have 3 or more instances of the code running at any time, often times in completely different forms. Any 1 is enough to restart the others. They are notoriously difficuly to eradicate, as the removal of only 1 or 2 is not enough. The only way is to identify and suspend all forms at the same time, and then remove them. Once you know how though, it's simple.

Tennessee, USA - Bb positive w/neuro involvement, suspected CPn
Doxy/Samento for Bb 2005-2007
Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F

Tennessee, USA - Bb positive w/neuro involvement, suspected CPnDoxy/Samento for Bb 2005-2007Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metro pulses @ 3x500mg

 Oh God, what have I wraught?!

I really thought this was a simple and obvious little page I was suggesting. Just a few things to help the Lyme's (there's the "s") folks understand more immediately the salient differences in treating Cpn as a co-infection. Silly me! I am almost driven to distraction by the direction the thread is taking. 

No, no, no! Let's me be clear, this is a Cpn site! We are, God please don't take this wrong, "co-infection friendly"  (tongue firmly in cheek with this phrasing) however. I think it's our maturity as a community that allows us to be so, as early on people were a little leary about too much emphasis on anything other than Cpn. 

Why am I so adamant about this? Mostly because I know that drifting off-mission is the death-knell of a website community like this. Also, because just understanding the in's and out's of Cpn across various diseases is a big challenge. And because treating Cpn is complicated enough, and I know Borrelia is also a complicated infection in it's own right. And the Lyme's CAP's often have their own differences and a rationale which deserves to be considered in it's own right.

Happily, thankfully, a number of Cpn/Borrelia coinfected folks have found the Cpn CAP's here also compatible for their Borrelia treatment. But I would not presume that for everyone. There is a place for different agents than the CAP's here might be using, different dosing and other considerations. 

Okay, panic over! Breathe Jim.... 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

ROTFLMAO!! That's kinda my point...you gotta figure out what you want to be, and go with it, but with the understanding that there are real reasons you are getting pulled in certain orthogonal directions.

Cpn is interesting by itself, but I'd wager that almost nobody here is sick with only Cpn, and I'd wager than nobody that got well did so by curing only the Cpn...assuming that was even possible...as CAP will inevitably cure other things too.

You can fight it Jim, but since the preferred treatment for Cpn is CAP, and CAP cures other things too, there will be lots of other bugs show up here, and as this gains speed, they'll show up even faster. This whole thread bears witness to that reality.

Which in some circular way has led me back to my first thought...maybe there needs to be a provision for CAP and Cpn as distinctly separate, yet intimately related topics.

<**refusing to look at Jim for fear of receiving stink eye of death**>

Tennessee, USA - Bb positive w/neuro involvement, suspected CPn
Doxy/Samento for Bb 2005-2007
Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F

Tennessee, USA - Bb positive w/neuro involvement, suspected CPnDoxy/Samento for Bb 2005-2007Started CAP 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metro pulses @ 3x500mg

Hmmm, I thought we were all just yammering until somebody volunteered!  Don't panic, Jim.  As soon as some brave soul volunteers, the discussion will turn the right direction.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Baleful eye of Mordor casts it's hypnotic glare in Bob's direction whilst orcs pour forth from the trenches in gibbering hordes... Image removed.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 The articles and links in the very first reply should be most helpful to those with lyme or tick-borne infections (TBI) concerns.  I did not envision Jim K's suggestion for a thread to mean a huge emphasis but just one thread where some of the major points of lyme/TBI would be there for reference or as links.  

It would be impossible and totally undesirable to go much beyond that - other than in conversation with questions and concerns among posters.  Other sites exist that do a very good job of cataloging lyme/TBI materials.   I meant to gather links to those sites and add it and will do so soon, adding to the first reply.  Some TBI patients who are here may not have seen some of the relevant sights and so having those links here is a very wise move. 

For purposes of this site, TBI patients will learn to consider similar, but different, language. I see Louise's point that other co-existing infections can be call co-infections.  Patients of TBI simply need to be aware of that when reading on sites other than explicitly for TBI 

I might clarify that co-infections, when speaking of TBI (tick-borne infections) generally mean those carried with the tick or mosquito.  With lyme (Borrelia, Bb), common co-infections that require DIFFERENT tests and treatment include babesia, ehrlichia (now called ana-something), bartonella, etc. - and others.  TBI Co-infections are often missed, especially by doctors that are not ILADS members or who have not read research by doctors of that group.

There are over 300 strains of Bb, and several of babesia and ehrlichia.  Master's disease is another as is STARI, another spirochete, like Bb.  Mycoplasma may be a TBI, too.  One treatment will NOT fill all.   

The lucky ones get adequate treatment up front.   However, as is common knowledge, many TBI patients have had testing and treatment withheld for years before finally even getting the proper tests.  Many might get the tests but can't find a treating doctor or one they can afford.  Most do the best they can.  

Those, like myself, finding a decade later, that they test high for Cpn are thrilled to see that some of the meds are the same and wonder if Cpn might have been holding them back - and if lyme is still a player - which it certainly the case if it was never treated - but, at least, the CAP protocol might cover a few bases at once.  As long as other TBI co-infections are addressed, and a doctor knowledgeable in both TBI and Cpn is on the case, that may work out well.  The attention to endotoxins and prophryins here will help anyone.

Still, there is much new to learn for the TBI folks who have spent years learning about lyme and co. (lyme and co. = lyme + other TBI).  We want to be sure all the bases are covered.

Also, as summer approaches, there will be hundreds, if not thousands, of new cases of lyme/TBI.  Our medical field is not prepared.  People are not educated as to how to prevent and treat ASAP with specifics drugs, etc. because most doctors have ignored this and there is the disagreement in the medical field.  Still, with information here on a thread, a new bite (from an infected tick) may be prevented from ruining a life if proper tick removal (not like we learned as kids) and immediate treatment are available.

 Cpn patients, like everyone, must be aware of measures to prevent TBI.  It may not be enough to be on the CAP - or it may.  But I'd sure want to know for sure.  A question for the LLMDs would be if flagyl might need to be used sooner as Bb can turn to cyst form very quickly in the presence of certain abx such as doxy.   Preventing that is best.  

So, I see this tread serving that purpose to by LINKING people to the best lyme/TBI sites , NOT by reworking the wheel.  Discussion and questions specific to TBI with consideration of Cpn, too, need a different corner of the room sometimes.

Because the medical field is so undereducated in the area of lyme/TBI, one must have the knowledge in case a tick comes home with them, or in from the garden with them.   I will be back with more TBI links in a little while, but in the meantime, check out the ones in the first reply above.  You might copy and past to a computer file in case you or anyone you know needs this information. 

My LINKS will come by Saturday morning.  Others may have other links, too. 

 

 

Thanks, Jim. I was starting to wonder, myself. Image removed.  I'll weigh in, as well.  I do not see any reason for this site to separate cpn and combined antibiotic protocol(s) and I don't begin to fathom why anyone would try to separate out those with cpn infection from those with Lyme AND cpn infection.

If you have cpn infection, or if you surmise you MIGHT have cpn infection, this site is the only game in town. Actually, it's the only site on the planet. (How cool is that, Jim?)

Number one, this thread probably exists only because no one jumped up immediately and said they'd write the page.  I interpreted the post exactly as you just described it, Jim - a request for someone to volunteer to write a simple little introductory explanation for people looking for info on Lyme and cpn.  It seems a goodly number of people on LymeNet are suddenly learning they're also infected with cpn and they're looking for basic information here.

 Though I have to say, Keebler, who's been on this site all of four days now, has written one heck of a start.  It needs to be edited way down and someone literate in both infections needs to add the cpn half of the equation to it.

Number two, this is what it says at the top of each page on this site. "Emerging information about chlamydia pneumoniae in disease & its treatment. Passing help forward!"  Whoever needs it, however we do it... we DO it. 

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

oh my, in Jan-06 I tested postive for Bb & subsequently positive on the Western Blot for 5? panels.  I was treated for this infection with an 8 wk cocktail of abx.  I can look it up if need be.  I have no idea if that did it for me.  I do know that my progress plateaued in spring of 07 which lead me here.

I had also tested positive for CPn in 06 but I was told that my immune system would handle it once I got my hormones, viruses & Bb under control.

I don't think I am knowledgeable enough to write a one pager for new comers.  Sorry Jim K, I am just holding together here with my pulses & managing my home.  Since returning from AZ I have not been out to take pictures once & I have been home 4  1 months.  Life here is more difficult for me due to weather changes!

CFIDS/ME 26yrs, FMS, IBS, EBV, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 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

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Soon, still,  Lyme LINKS post - I said I'd have that by how but am way too tired and melted from a heat wave.

For those wanting more right now about lyme, here is one discussion link.  you can look around the page and find the home page with more inform.  Professional literature is found through a link on the left side of the page.

LYMENET - http://flash.lymenet.org/ -  can be very overwhelming for a new comer, but they have a NEWBIE section.  

Of recent posts of interest is a Psychology Today article about a family with lyme that had to go undiagnosed for a long time.  

I'll still hunt for a page I have buried here with some really great links.  

 

You have to understand Cpn to understand the CAP.  Whether the CAPs we adopt here are treating other infections or not is not important.   Cpn is what we are treating here and also the most likely stealth infection that most people visiting the site will be infected with.   Cpn with its particularly difficult life cycle may well be one of the more difficult infections to treat and if the treatment works for other problematic infections then great, but what we are treating here is Cpn. 

I'm having enough problem dealing with learning about Cpn, so I'm sticking to getting more understanding of this parasite.   Until I think that some other really significant parasite has invaded my body I'm sticking to Cpn, it ticks (pardon the pun) all my boxes.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Article linking treatment for cpn to borrelia treatment? No one knows how to link them yet - not Stratton, Wheldon, Burrescano, Stricker etc. No one.

We don't even know what either disease is in terms of the infection combos. For all we know there is an underlying virus like HIV that keeps us sickies unable to clear the bacteria. Maybe everyone with chronic Lyme has c. pneumonia. We DO NOT KNOW. One thing we suspect based on clinical evidence is that 95% of cfs patients are infected with borrelia. 70% are infected with mycoplasma. But we aren't competing to win the prize on which infection is key.

I am currently reading arguably the best book on Lyme out. It's by Pamela Weintraub. She lives in the same town as Bill Clinton. She, her husband and her kids all have severe Lyme. Do her neighbors ALL have Lyme? Do any of them have cpn? Why are some sick while others are seemingly healthy? My husband and son have borrelia but they have never been chronically sick like me.

I agree with Jim K that you have to keep the message board on track. After all patients with cpn are not cured in two weeks, more like a few years and then they are well, but probably not cured. Ya can't let 'im get off track and never get well.

So we are walking a tightrope. If we get too restrictive of new thoughts we risk missing the "elephant" hiding in the body.  What if the main infecton of Lyme is actually cpn? What if the main infection of cpn is undiagnosed borrelia or some form of mycoplasma? Hey, you all do realize that the tests for borrelia are ATTROCTIOUSLY INACCURATE. And then there is babesia, 17 strains, one strain has a test...

Will the cap treat borrelia? Is borrelia the issue? Okay, enough stupid questions here. You get the point. I am seeing Powell next week. If he can convince me that we know enough NOW to write a compare/contrast treatment for borrelia, babesia, bartonella, parasites, rickettsia and, yes, c. pneumoniae, oh, and mycoplasmas - I might take a crack at writing it. Much of it would be speculative, but still worth writing if we think the diseases fit together in terms of treatment.

Paula Carnes

Writer, Patient advocate for cfids

Biotech Investment Research

Paula Carnes

Prevention is possible for Lyme/TBI.

It's great that the CAP is adequate for most here.  It is not my intent of  to complicate matters for anyone as, yes,  Cpn is complex enough.  

Still, even if the CAP is working and Cpn is the sole dx, with lyme and TBI (tick-borne infections) on the rise, some of the information and links here may be of help in preventing future infections.  It's also good to copy some links to a handy file in case a family member or a friend needs fast information and guidance.  If someone is bitten by an infected tick, minutes matter.  Minutes - according to recent reports.  

Anywhere there are deer - and also birds, mice and just about any other creature of nature - there can be ticks, even in desert areas.  Although less frequent than tick transmission, mosquitoes and fleas have also been shown to carry lyme.    Borrelia (including lyme but also other strains) and other TBI cases are increasing each year around the world and, yes, it is so complex that most people would rather not know more. But beyond knowledge taming fears, it saves lives.

Acute Babesia or Acute Ehrlichia  can each be life-threatening (as can lyme in rare cases).  Last summer in Missouri, a little girl died of ehrlichia.  Anyone who has had their spleen removed should know that babesia can be fatal, therefore immediate care is vital in the event of a tick bite, even before TBI's may be determined.

So, lyme simply can't stand alone on the diagnostic check-list for TBI.  A CAP tx as designed here will not work for some of the TBI.  It's just good to know that if it's needed.  If, at chronic stages for some folks, CAP does the trick with Bb, hey, terrific.  

Whether during a walk in the woods or a day of gardening, it is empowering to have knowledge regarding how to avoid tick attachment, properly tick removal and tick testing details -  or being able to recognize certain symptoms and how to quickly find doctors who are up on the research . . . all this can prevent untold problems.  

And, while the CAP may be helpful and might possibly even be preventive for Bb or ehrlichia.  However, expert advice would be necessary as when to add flagyl to address - or prevent - the cyst form of Bb.

From what I've read, the CAP would not guard against babesia.  Babesia requires anti-malarial, anti-protozoa measures.  However, depending upon the Babesia strain, the treatment may vary.  I am not that familiar with whether CAP would be preventative or cover Bartonella, or mycoplasma, other TBI's.

My wish for everyone is that they need never refer to "lyme" links but if everyone had had access to such knowledge early on, countless lives would have been so very different.  With knowledge, Lyme/TBI can be prevented - or the destruction and confusion minimized.  So, please pardon if this seems heavy. Those of us who were forced to scramble in the dark truly want to prevent that for others as well as encourage many healthy and wondrous experiences in nature.