Cpnhelp.org

Oops! That should be NACi acts on EBs not CBs...

Well, chance to test my shiny new sig anyhow...

MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

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MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

 Q1(<what kind of scientific measure is a 'small amount'>)

We take from 1200mg to 2400mg daily...   Most of us experience sneezing and flu like symptoms.    It has been shown to burst the EBs early so that they are unable to colonise new cells.   It does nothing to address the problem of already infected cells so that is why the two bacteriostatics are added to stop them bacteria from replicating.

The rest of the questions are beyond me, so you will have to wait for the people state side to wake up and see your blog. 

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi

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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 6.5 Wheldon CAP 16th March 2006

Hehe, if I only listened to scientists I would likely not be here right now!

A small amount is a small amount!-I honestly have no idea as I havent yet worked out how to weigh out 1.2g (I guess I could nick the scales out the lab! ), and its just 100g of powder in a tub...

Your comment that NACi targeting EBs does nothing to address existing infection has hit the nail on the head...is there a (preferably non-prescription) drug/supplement I can add that may have an effect on either of the other 2 life forms? I only want to add in one thing at a time...

DK 

MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

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MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

Dan- You've got this in wrong order. Time to go back and look at the basic outline again-- It took me quite a while to absorb the whole thing too.

NACi is being used against the Elementary Bodies (EBi's), not against the cryptic formi. It is being used instead of penacillamine, the agent used in the original studies, as it is cheaper, supports liver function, is an antioxidanti, and doesn't upset bowel flora. Its use as a disulphide reducing agent is well known, but Dr. Wheldon and Dr. Powell both independantly discerned that it could be used against EB's instead of amoxi. Dr. Stratton confirmed that he thought this an appropriate agent for this purpose-- but it has not been lab tested as the amoxi and other agents had been.

The understanding is that the reducing agent disolves the bonds of the cell wall of EB's which are in the intracellulari spaces, ie before they have invaded a cell. This causes them to convert prematurely to RB form, which they normally do only inside the cell to begin replication. Since they are outside the cell in this conversion they are suceptable to the immunei system and are destroyed. Additionally, RB's cannot survive extracellularly as they derive nutrients via host cell machinery.

Michelle is right, you have to ramp up to 1200-2400mg to really have effect.

The only way of knowing cryptic load is one's response to flagyli/tinii. I know that having taken Rifampin for a period along with my other meds, I had stronger pulse reactions, suggesting that the additional med had driven more Cpni into cryptic form. If I recall correctly, the Vanderbilt tests developed by Stratton's lab actually were able to test for presence of cryptic Cpn. They have not yet restarted their Cpn lab, so that testing is not available. You might give Dr. Stratton a call for an enlightening discussion.

The cardiac, and other inflammationi, appears to be from cytokinei reactions to LPSi and HSPi 60, and from the oxidation which occurs in relation to this. There is a bunch of stuff on the site on this, including a rather dramatic diagram of cytokine reactions, somewhere. Try a search for cytokinesi. Also, go through the Cardiac section of the Research link. Lots there which might be relevant.

The only agents proven to have effectiveness, so far, are the nitroamazole derivatives like flagyl, tinidazole, and (interestingly) nitrofurantoin. Of these the flagyl seems the most reliable but causes the most side effects. Tini seems better tolerated and has a longer half life. No one I know has used the nitrofurantoin for this purpose, but it was found to have effect in the original Vanderbilt research.

 

Read through the original patent materials referenced in the Research section, as they contain a lot of useful and more technical explanations.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! abou

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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

Not that I know of...  I imagine that if there were, not many of us would be here.   This is a difficult organism to get rid of and you need the big guns to do that and you have to use them consistently for a long time.

There is evidence to suggest that the other supplementsi we take support the metabolic processes whilst taking the antibioticsi, also some of the supplementsi help to dissipate any porphiric problems some of us may have. 

NACi replaced amoxicillini which was used in the original protocol and I think we all feel thankful we don't have to take 4 antibiotics any more. 

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi

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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 6.5 Wheldon CAP 16th March 2006

To get the best effect from taking NACi, you need to also be taking Vitamin E and selenium---check-out the recommended supplementsi.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyli pulses; antivirals; chelation; LDNi.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Any scientist worth his salt should have some sort of scale around. If you can't afford a real lab scale, get one of the ones sold to reloaders (of firearms ammunition). They go down to $20 or so in price, while still delivering good accuracy. For instance, this one.

(Yes, it's a mechanical balance, not electronic, and is calibrated in grains rather than grams. But its basic accuracy is more than good enough for weighing out 1.2g -- 18.5 grains -- of NACi.)

Or just buy the pills, like the rest of us.

A 'weird head', aka 'brain fog', was my only reaction to 600mg of NAC. It took 1200mg twice a day to give me the typical reactions.

I don't want to put you off using an interactive 'blog' to explore Cpni, but most of us here take this very seriously and treat it with the scientific respect it deserves, and to the best of our ability, so we have taken the touble to record any relevant material in the handbook.  

It is great that someone in your positions should be looking into the consequences of a Cpn infection so I for one would like to support you in that; but a lot of the questions you ask have already been answered in the handbook and it would be time wasting on our part to go over this again with someone like you who obviously has the knowledge to understand the contents easily.

Good luck with your research. 

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi

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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 6.5 Wheldon CAP 16th March 2006

Hi Dan,

I haven't read much of the Cpni stuff on circulatory disease, so I don't know if anyone has examined whether those are in the persister state.

However, in the reactive arthritis associated with C. trach, this stuff has been explored... basically, I think, by checking out the morphology (oversized RBs are associated with the persister phenotype), and expression profiles via IEM and mRNA qPCR. (And, yes - there are definitely some really major expression differences.) Check out PMIDs 7575691, 14643638.... 16192289 is also of interest. It does seem that the persister form dominates in this diagnosis (which is also consistently culture-negative, suggesting a paucity of EBs).

In Alzheimers -- where the much-disputed detections of Cpn have come out of the Balin B and Hudson labs -- the EMs don't show any morphology that necessarily points to a persister-type physiology. But, certainly, a sizeable doxyi + rifampin trial did not resolve the disease as it would, say, a majority of acute urogenital C. trach. So if Alzheimer's is indeed a disease of infection, there would have to be some reason (such as a persister-ish or partially-persister-ish physiology) for that limited-to-poor response to antibacterials. Of course, no one has looked at any Alz brains, post-mortem, after antibacterial treatment continued up until the time of death, in order to ascertain whether the chlamydial load was actually reduced by the treatment (I am not sure whether this has (ever?) been done in atherosclerosis either??). That should eventually be done, but a more obvious and immediate goal is for different labs to agree on whether the chlamydiae are there in Alzheimer's in the first place!

Anyway, this one: 17031241 has some relevance to Cpn behavior in the CNSi.

As for the orthodox idea of how inflammationi works in atheromas - I have no grasp on it... Jim recently sent me this paper, though, which has some bearing on the subject:

http://www.jimmunol.org/cgi/content/full/173/10/5901

 

> No one I know has used the nitrofurantoin for this purpose, but it was found to have effect in the original Vanderbilt research. 

"The peak blood concentration of nitrofurantoin following an oral dose of nitrofurantoin 100mg, is less than 1 μg/ml and may be undetectable; tissue penetration is negligible; the drug is well concentrated in the urine: 75% of the dose is rapidly metabolised by the liver, but 25% of the dose is excreted in the urine unchanged, reliably achieving levels of 200 μg/ml or more. For this reason, nitrofurantoin cannot be used to treat anything other than simple cystitis."

Please note, that quote is from Wikipedia, which is NOT to be trusted as a source of medical information. But if anyone is interested in using nitrofurantoin, they should definitely figure out whether that info is accurate / correctly reasoned, or not.

BTW Dan, Since you're interested in neo-epitopes derived from oxidation... there's a new paper out on those in CFSi. I ordered a xerox of it, but haven't picked it up yet. ======================= Neuroi Endocrinol Lett. 2006 Oct;27(5):615-21. Links Chronic fatigue syndromei is accompanied by an IgMi-related immunei response directed against neopitopes formed by oxidative or nitrosative damage to lipids and proteins. Maes M, Mihaylova I, Leunis JC. MCare4U Outpatient Clinics, Antwerp, Belgium. There is now some evidence that chronic fatigue syndrome (CFS) is accompanied by signs of oxidative stress and by a decreased antioxidanti status. The aim of the present study was to examine whether CFS is accompanied by an immune response to neoepitopes of a variety of modified lipids and proteins indicating damage caused by oxidative and nitrosative stress. Toward this end we examined serum antibodies to fatty acids (oleic, palmitic and myristic acid), by-products of lipid peroxidation, i.e. azelaic acid and malondialdehyde (MDA), acetylcholine, S-farnesyl-L-cysteine, and N-oxide modified amino-acids in 14 patients with CFS, 14 subjects with partial CFS and 11 normal controls. We found that the prevalences and mean values for the serum IgM levels directed against oleic, palmitic and myristic acid, MDA, azelaic acid, S-farnesyl-L-cysteine, and the N-oxide derivates, nitro-tyrosine, nitro-phenylalanine, nitro-arginine, nitro-tryptophan, and nitro-cysteinyl were significantly greater in CFS patients than in normal controls, whereas patients with partial CFS took up an intermediate position. There were significant and positive correlations between the serum IgM levels directed against fatty acids, MDA and azelaic acid and the above N-oxide-derivates and the severity of illness (as measured by the FibroFatigue scale) and symptoms, such as aches and pain, muscular tension and fatigue. The results show that CFS is characterized by an IgM-related immune response directed against disrupted lipid membrane components, by-products of lipid peroxidation, S-farnesyl-L-cysteine, and NO-modified amino-acids, which are normally not detected by the immune system but due to oxidative and nitrosative damage have become immunogenic. PMID: 17159817 [PubMed - in process]

 Yeah, I should have said this was all sensitivity in the petri dish, not as a treatment. Probably why nitro is not the treatment of choice for cryptic-persistent phase.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! abou

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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

Ok, well it seems I have spoken out of turn so i must apologise to those who think I am not treating the blog facility with all due respect. It was not my intention to get anyones backs up-I merely wanted to ask firstly about my personal circumstances and secondly about a few specific research points. Thus: 1.are my symptoms attributable to NACi (ok perhaps I could trawl the forums to see if anyone else mentions a weird head)2.one single adjunct to NAC -yes I'm quite aware that the full CAPi is needed for effective treatment but there seems to be a lack of directions for anyone wanting to do it slowly-including in the handbook-yes, i did look! 3. is Cpni mostly in the cryptic formi -I wondered whether other members had any literature references on this point 4. is the inflammatory trigger generally held to be oxLDL? I guess I should have looked this one up, so I do apologise for that. I have since found Libby 2004 which would seem to agree with that statement. Anyhow, thankyou for you suggestions and answers. I will try Vitamin E next, look up those pubmed refs...and shut up in future! cheers all, D. MBioChem, currently studying medicine, research project on Cpn and atherosclerosis

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MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

Dan, Again, take the selenium as well as the vitamin E to get the best effect from the NACi.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyli pulses; antivirals; chelation; LDNi.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, where are you getting the advice on selenium and vitamin E being important with NACi? I don't think I've seen it elsewhere. (Remember that Dan's basically healthy, and probably wants to play around with NAC just to see whether he's infected. As such, he wouldn't need anything to mitigate its impact, as vitamin E might, or to strengthen the immunei system, as selenium might. Also, when doing an experiment like that, it's good to minimize the number of variables one changes at one time -- which means taking only the one thing is preferable.)

I think you both have good points: Vitamin E is antioxidanti and selenium might improve immunei function. As such, both would perhaps be useful additions. However, as Norman says, with my 'kitchen science' approach I just want to add one thing at a time, and see what effect-if any-each component has. Anyhow, I think I have been shamed into buying a pair of sensitive scales next (if only I could put it on the research budget )

 

PS: thanks for those Pubmed refs Eric - very interesting.  

 

MBioChem, currently studying medicine, research project on Cpn and atherosclerosis

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MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

Hi Dan,

Gosh, I'm personally a big believer in the old saying that the only stupid question is the one left unasked.   While I'd encourage you to read through the very valuable info on this site, don't be afraid to ask questions either.  Answers can help give you a jump-start or explain things that aren't otherwise all that clear...

I think Jim and the others seemed to answer your questions fairly well above, but here's a little more info in case it might help.

Jim mentioned "The cardiac, and other inflammationi, appears to be from cytokinei reactions to LPSi and HSPi 60, and from the oxidation which occurs in relation to this".  I recently was surprised (as person with no medical background) that this reaction has been mapped out fairly well in early gram-negative sepsis.   Here's a great, although very simplified diagram of what's going on there:

http://inet.uni2.dk/~iirrh/IIR/08vasc/+SepCK.htm

They've left off much of the inflammatory cascade, including the elevated MMPs that seem to cause much of the tissue damage that we see in many of the diseasesi that have been linked with Cpni in past studies.   Here's a good thread for more discussion on this:

http://www.cpnhelp.org/multiple_sclerosis_damage#comment-9229 

Also, don't miss the thread presenting Dr Stratton's Recent Observations on Cpn infection for more information about the course and pattern of Cpn infection :

http://www.cpnhelp.org/?q=recentobservations

This makes me wonder as a layman why more people haven't put two and two together and linked all diseases that seem to involve chronic inflammation of the blood vessels with all known gram-negative bacteria that have been shown to invade and persist in the bloodstream and are also known to be lower in virulence so as not to cause severe sepsis and death.   But what do I know...

As for reactions to NACi, while many on this site have reported getting flu-like symptoms (congestion, fatigue, etc) from taking it, others did not seem to get this type of reaction.  Dr Stratton states that reaction to NAC may give a good reading of the level of EBi involvement, but my personal, non medical background opinion on this is that people may also react to EB die-off differently, potentially depending on where the majority of EBs are located in your own particular case or potentially your own personal make-up.   I may get nasal congestion and  fatigue, you may get stomach problems and "weird head"...

Anyway, hope this helps a bit.   Keep us posted on your progress...

On Combined Antibiotic Protocol for Cpn in Rosaceai since 01/06

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Treatment for Rosaceai

• CAPi:  01/06 - 07/07
• High-Dose Vit D3, NACi & FIRi Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

Hi Norman, I was going on memory about the selenium. Now, when I look back at the chart of supplementsi and click the link to David's site as given on the chart, I'm not finding the information. I could be "mis-remembering," but the collective information between the two sites seems different to me now from what it was several months ago. At that time, I perceived that Vitamin E extended or recharged the NACi, and that selenium did the same for Vitamin E. At this time, like you, I can find nothing to support that perception. Thanks for the jiggle,

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyli pulses; antivirals; chelation; LDNi.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Red, I think you would like my current working hypothesis :) I would go a little more generalised and say that many chronic inflammatory diseasesi may be linked with many types of persistent bacteria (not just in the blood)...I havent expressed it very well but hopefully you know what I mean! I have an idea as to why this happens too (ie why this reaction occurs with so many bacteria), but since I have absolutely no evidence to support my theory yet I wont go spreading rumours! I am watching the for/against Vit E/selenium discussion with interest. I am wondering whether to just go for a multi-vitamin as the next thing... MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

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MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

Hi Dan,

It definitely sounds like an interesting hypothesis, and one I certainly believe in as well.  I was talking more about the chronic inflammatory / autoimmune diseasesi that seem to involve vasculitisi.   Any chance we'll get a look at what you come up with at some point?   Best of luck on it though...

BTW, speaking of supplementsi, be sure to read through some of the info on Vit D3 on the site if you already haven't:

http://www.cpnhelp.org/the_vitamin_d_page 

http://www.cpnhelp.org/vitamin_d_supplementation 

Also since Vit D3 has been shown via studies to induce cathelicidin production, searching through pubmed on the terms "cathelicidin" or "LL-37" (the human cathelicidin) returns studies indicating a host of different microbes Vit D might be expected to have antimicrobial effects against (via increased LL-37 production)...

Interesting too the number of chronic inflammatory / autoimmune diseases that studies suggest increased levels of Vitamin D3 may either help prevent or help with symptoms.   This might logically make someone also think about microbes being involved, huh (again just from my own non-medical point of view)?...

On Combined Antibiotic Protocol for Cpn in Rosaceai since 01/06

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Treatment for Rosaceai

• CAPi:  01/06 - 07/07
• High-Dose Vit D3, NACi & FIRi Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

I think a small palmful should just about cover the 1.2g.   hope thats helpful.

 This is turning into a very interesting give and take discussion. I particularly appreciate Red going the extra yard and linking the pages where some existing data is. There is so much on the site a lot of stuff tends to get buried, but someone with a particular interest in it will know where it can be found! Thanks Red. 

Dan- I hope I wasn't too testy in my response. I certainly didn't intend to convey any discouragement of open questioning, stupid questions (I ask quite a few myself) or the like. I get a bit curt in my tone when I respond to things when I'm tired or overworked, all of which apply right now! Carry on... 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

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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

 Thankyou once again everybody, and particularly Red. The Vitamin Di stuff is very very interesting-particularly is it seems to act against TB, another chronic infection. Also the proposal that flu incidence is linked to sun exposure is intriguing! I dont suppose anyone has noticed a seasonal element to their symptoms? That would probably be before they started treatment and taking lots of supplementsi...

Sorry for my somewhat defensive response previously-I was tired and grumpy and felling a bit put upon at the time! 

Based on the antibiotic properties of Vit D I am encouraged to add that next-either alone or as part of a multivit (I know thats not ideal, but adding all the components of a multivit one at a time will take too long and be lots of pills and expensive!). Got myself some ebay scales now for the NACi

 

 

MBioChem, currently studying medicine, research project on Cpn and atherosclerosis

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MBioChem, currently studying medicine, research project on Cpni and atherosclerosis

Re scales....Oh good... and if you want to avoid the nasty taste you can buy some empty capsules from this place. The insert link facility is not working for me today so you might have to copy and paste the URL into your address bar.

http://www.uk-capsules.com/empty_gelatin_capsules_size_0.html

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi

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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 6.5 Wheldon CAP 16th March 2006