Cpnhelp.org

Addendum: Since I was unable to edit the above post......

I've just re-read the compared protocolsⁱ which state "once a month course of ABXⁱ and metronidazoleⁱ".   Does this mean 1 week a month, 2 weeks?  

Still think it would be helpful to have a special section or Forum area for those who are intermittant :)

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, Armour Thyroid ERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<

If you read this page on David Wheldonⁱ's site it explains how to go about the intermittent protocol.

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Michèle (UK) GFAⁱ: Wheldon CAPⁱ 1st May 2006. Daily Doxyⁱ, Azi MWF, metroⁱ pulse.

Michele.. quite a bit to have to sift through  -- it's at the very end :) .... I probably would not have referenced this as it relates to MSⁱ, which I don't have.  I still think we need a more direct, specific direction to the referfence, IMHOⁱ.  But thanks for showing me this link.

Dr. Wheldon's INTERMITTENT PROTOCOL RECOMMENDATION:

The eventual aim is to give all three agents intermittently so that there is some respite from antibioticsⁱ. This, the final leg of treatment, may entail a 14 day course of doxycycline and roxithromycin, with a five day course of metronidazoleⁱ in the middle. This course is given once a month. After several months the intervals between the antibiotics may be cautiously extended. Rifampicin is not suitable for intermittent use, and azithromycin may be given instead.

JeanneRoz

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, Armour Thyroid ERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<

JeanneR,

My understanding is the only one recommending intermittent is DW and his emphasis is on MSⁱ.  Here's the diagram to go along with your quote from DW's site:

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NACⁱ 2.4g, Zithⁱ 250mg/MWF, minoⁱ 200mg, Tiniⁱ 5day/1g/5 pulses, Valcyte
Supplementsⁱ, CFIDSⁱ/FMSⁱ, Hashimoto's, Psoriasis, PA, IBSⁱ, Sec Addisons

Reenie, I only included  the quote as the chart really isn't that clear (to me anyway).

I do believe that Dr. Stratton also suggests going intermittant.***  This info came from the link Michele provided and it was directed toward an explanation of the  treatment of MSⁱ.  I would not have referenced it on my own as I don't have MS (plus it was at the very end of the article ;)

I was trying to stimulate some input on this thread from those here who are on  intermittant therapy.  With reference to the compared protocol page,  the statement above "once a month course of ABXⁱi and metronidazoleⁱ"  isn't that clear or specific either. 

So my simplistic question is: Intermittant CAP therapy consists of:  X days on  Azith and Doxyⁱ (combined) and X days of added Flagyl?  And what does "once a month entail?   2 weeks?

Anyone???

Thanks much,

JeanneRoz

*** Addendum:  you're right.... here's what Dr. Stratton recommends:

If minimal reactions, I'd continue therapy for at least 1 year and then recheck titers. If titers were low, I'd add rifampin or rifabutin (preferably), using the rifamycin with pyruvate taken 1 hour before the rifamycin. If no reactions to this, I'd consider the therapy to be complete.

I would continue to monitor titers every several years. If the titers increased, I'd retreat with 6 months of clarithromycin or roxithromycin plus rifabutin plus pyruvate and ibuprofen. I'd continue the NACⁱ for life.

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, Armour Thyroid ERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<

JeanneR, 

I like diagrams and it helps me understand.  If you use the first 12 months of the blue on the diagram as the months of the calendar on full CAPⁱ and let's just call month 13 starting over as in January and count each month as having 30 days for ease of dates, I read the diagram like this... 

Ending full time CAP around 12/10 with last 5 day pulse (12/1 - 12/5) then starting doxyⁱ(everyday) and Zithⁱ (MWF) starting again on about 1/16 -1/30 with a flagylⁱ (or tiniⁱ) pulse for 5 days starting at the last 5 days (1/25 - 1/30) approximately.  

In the diagram, this schedule is repeated every other month so one could say it was given on the odd numbered months and the even numbered months are skipped.  So what is worded in the quote is not exactly what the diagram is depicting.  I think the quote is suggesting to do this 14 day course with a pulse once a month, then the goal is to extend it out as said, 

Remember, DW says, The details will vary according to suspected bacterial loadⁱ
and uses these guidelines as approximate.  So, it sounds to me like one would have to go by how they are doing but using these guidelines for intermittent therapy. 

___________________________________________________________

NACⁱ 2.4g, Zithⁱ 250mg/MWF, minoⁱ 200mg, Tiniⁱ 5day/1g/5 pulses, Valcyte
Supplementsⁱ, CFIDSⁱ/FMSⁱ, Hashimoto's, Psoriasis, PA, IBSⁱ, Sec Addisons

Reenie, just a thought.... perhaps you could edit your post and place the diagram at the bottom of your explanation so they are together?   I did it (in word) and put it in OneNote for future reference.

Addendum:  I guess  another way to look at it would be: every other month do ABXⁱ starting on the 15th or 16th and pulse the last 5 days to the end of the month (?)

JeanneRoz 

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, Armour Thyroid ERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<

To me, once a month means do this one time every month. In other words, you do the 14 day course once during each month. Then, after a few months of this, you spread it out more and more. i.e. Once every forty days, then once every fifty or sixty days.

The whole purpose of doing intermittent therapy isn't perfect timing; it's making sure, as you wean yourself from full-time treatment, that you're still hitting any residual cpnⁱ bacteria.

There's a misconception that, if you don't have MSⁱ, the criteria don't apply.  We are not killing MS, or RA, or whatever.  We are killing cpn bacteria, which are instrumental in those diseasesⁱ.  Killing cpn bacteria, for the most part, requires the same protocol across the board, as far as anyone knows. 

DW's protocol applies across the board.  Remember, you go intermittent when you've had no reaction to treatment for a while.  For some folks, that's after a year.  For some folks, that'll be MANY years.  And that's when you go intermittent. 

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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

MacKintosh said, "To me, once a month means do this one time every month. In other words, you do the 14 day course once during each month. Then, after a few months of this, you spread it out more and more. i.e. Once every forty days, then once every fifty or sixty days."  

When you say that do you mean to take CAPⁱ meds  two weeks on and two weeks off during the course of each month for a period of time initially?    

I could also read from that statement, that after 14 days on CAP meds it would be another for 28 days off of meds before you would start another cycle of the 14 days on CAP meds?  

There is room for misunderstanding in the words "every month" in the way that I am looking at it. 

This is a really useful conversation, it points out ways that the process can be misinterperted, or misread, or misunderstood.

From what I see looking at the graph and from my point of view, I see two weeks on, four week off, two weeks on, etc until the space between two week on meds begins to lengthens to 6 weeks off, 8 week off etc.

I can see where we are creating a way to talk about and describe the early process of intermittent CAP a bit more concretely for those that need it only!

Personally I will be doing a slightly longer number of "on days" with a minimum of 4 weeks off between my "On CAP intermittent cycles" I see this as a personal modification only for my particular situation and needs.

___________________________________________________________

6-07WheldonCAP CPnBb FMSⁱ-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxinⁱ

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tiniⁱ, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin

Just to confirm, my own understanding at least:

1. The initial intermittent suggested by DW is once a month-- 7 days in total starting with doxyⁱ & azith/roxyⁱ, on the 2nd day add flagylⁱ/tiniⁱ for the remaining 5 days.
2. Eventually stretching the spacing to every other month.
3. He has said in the past that you can move to this gradually, e.g. first do two weeks on CAPⁱ and two weeks off: starting with doxy & azith/roxy and continuing for all of the 14 days, on the last 5 of those days doing a pulse of flagyl/tini, then two weeks no meds.

 Dr. Stratton has suggested prior to going intermittent moving from the regular pulsed (Wheldon) CAP, first moving to a full time continuous protocol (including flagyl daily) and also adding Rifampin. The principle here is that the best killing effect is with all agents for all phases at the same time, as well as adding a more potent antichlamydial to get what the cycline and macrolide have missed. When no reactions, then moving to an intermittent protocol as described above. He also believes that some patients, due to genetic susceptibility, family history, work exposure and other factors, may require intermittent on some basis (every 2, 4 or 6 months, depending) for a lifetime to prevent recurrence. 

My personal opinion, from my own experience and reactions even after a long time on the Wheldon CAP, is that the course of Rifampin is highly advisable before going to intermittent. It is the "acid test" as it is a much more potent antichlamydial (rifabutin, a more expensive and longer acting version even more-so) and will reveal whether there is Cpnⁱ left in your system when other things won't. Dr. Stratton, since my very first conversation with him years ago, has continued to say this is how he would test Cpn clearance when patients say they no longer have reactions to the other CAP meds. Quite a few, in his experience, "get hammered" by the Rifampin and recognize the risk they are taking by going to intermittent without it. 

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

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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

As far as the acid test, what is the dosage you are using re; Rifampin and for how long?  Do any of you get Rifampin or rifabutin online? If so, where and what is the cost? 

I'm concerned my Dr will not want to give me this additional abxⁱ but I understand there is more liver monitoring required with it?  How often do you suggest testing with it?

I know these questions are a little premature but I do want to know where I'm going.  I'm also going to copy and save Jim's post for reference when it gets to be time to ask for the Rifampin.  

Thanks all.

___________________________________________________________

NACⁱ 2.4g, Zithⁱ 250mg/MWF, minoⁱ 200mg, Tiniⁱ 5day/1g/5 pulses, Valcyte
Supplementsⁱ, CFIDSⁱ/FMSⁱ, Hashimoto's, Psoriasis, PA, IBSⁱ, Sec Addisons

The usual adult dosage 300-600mg a day on an empty stomach, and some have to work up to this. Rifampin is pretty cheap at most pharmacies. Rifabutin I think is expensive. These are not meds you should use without a doctors supervision as they require liver monitoring, so I would not encourage them as do it yourself. Dr. Stratton has said monthly monitoring at least, and of course this may be more frequentdepending on your clinical history.

I'm bookmarking this one too, as it should be in the handbook eventually.

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

Reenie,

The first time I was on Rifampin, my liver functions were checked every three months.  I began Rifampin a month or two after I was diagnosed and was on Avonex at the time.  They went way, way up to around 150 by Feb of 2005 and I was ordered to stop all abxⁱ for one month. (I had forgotten about this - that was a very bad year)  I believe they were within the norm after that but the following Nov I stopped Avonex for good and was soon fired by my neurologist.  (Oh, happy day!) 

The final "acid test" period of four months following my four years of regular abxⁱ, everything was normal every time I was checked.  I took Doxyⁱ, Azith, Rifampin, and flagylⁱ. As a matter of fact, in the last year and a half, it was ALWAYS remarked about how very, very good ALL my numbers were and how FABULOUS I looked.

Rica

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Thank you everyone for coming forth with this info.... exactly what I was trying to elicit!

JeanneRoz

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, Armour Thyroid ERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<

Hey, I knew I was doing something wrong. No one says I look fabulous. They say, "You'd better sit down. No, you'll like the big, strong -- I mean, soft -- chair better."

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Ron

On CAPⁱ for CFSⁱ starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

But I think the ones who said that were comparing me to a dead body! So if you have good numbers and you're up walking around breathing, you probably look fabulous.

Rica

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

Fabulous is a relative state then.  I'll take it any way I can!   And for me Rifampin is certainly not an option, with my drug detox challenges I will be doing intermittent at this time without a course of it.  Thanks Jim for the link to the details that gave me the information that I needed to make that personal choice about Rifampin.   I need to budget my detox capacity, I have made it through 20 months of CAP despite the challenges that seem to cause many to fall by the wayside. 

I am going to hunt around for that link to the Rifampin information and post it here.  I'll include my post response from blog page.

Submitted by Louise on Sat, 2009-01-10 10:29.

Jim, Re-read your comment and am now onto the full write up from which you posted (yes I finally noticed the link at the end for citation). 

Seeing your comment the first time through had me wondering if Rifampin increases P-450 making more of it available in the body?  Hence if it is stopped and more toxic drug continued there would be less P-450 in the body to detox the remaining drug. 

So I am now off to the link to read the full review, thanks ever so much for providing it for a read.  Have not found that site before, looks like the contents of the reviews are rather in depth.

http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Monographs/CPS-%20(General%20Monographs-%20R)/RIFAMPIN.html

Thanks once again for your assistance.  Louise  

Well, just printed it out and read it and it is a good read, answered many of my general questions and gives me increased respect for the drug.   I do see why it is generally a substitute for Doxyⁱi and might not team well with Clari and that it might work in harmony with Roxi.  Lots of important considerations to be taken with the use of this pharmaceutical.   Many interactions of significance, definitely a precise balancing act.

Unlikely to be a good pick for me at this time and wouldn't want to waste yet either!

Again thanks so much for this link, I am now so much more well informed!

I provide this link to detailed information about Rifampin so that folks take the serious considerations to heart as they enter into it's use. 

My intention is education not a determent to it's use.   I wanted to do the Rifampin challenge before going intermittent and after exploring and discussing it, costs vs benefits in my situation, I have chosen not to.  

Should I see in the future that a course of Rifampin is warranted and my situation changes (negative LFTs) then maybe.  I have learned never to say, never say never bout nothin, but just to say I am choosing not to just now, and this time it is regarding my personal use of Rifampin before intermittent CAP.

A break from continuous CAP for me is warranted and will result in the initiation of Intermittent CAP since I am at 20 mos and have tolerated significant liver inflamation as a result of Doxy likely due to my geneticsⁱ and physiology which was screened at a regional center a year ago this month.     And continued to ride it out making progress certainly as I have.   

There is a gold standard and then there is, you do what you have to do considering the hand that you have been delt.   

I am anticipating returning vigor as I begin intermittent CAP with the period of liver regeneration that will be afforded by the periods of time off of the abxⁱ/antimicrobial meds. 

I know that I am in the minority, and being such I feel the need to express that for anyone else who needs to choose to abstain from the Rifampin challenge before going to Intermittent CAP.  It simply needs to be spoken to have the information available to others who may also have similar challenges.

I found this article through links provided on this website. The title is How Inflammatory Disease Causes Fatigue,   http://www.sciencedaily.com/releases/2009/02/090217173034.htm  In the research they used the experimental model of liver inflammationⁱ, for me I have liver inflammation as a result of CAP, this is not to blame CAP it is just a side occurance of the needed CAP therapy for me.  And it show me that CAP can assist a large portion of my needs but not all of them. 

We are each a complex puzzle with many variables.  I expected to be much longer on continuous before progressing to intermittent.   My hand is being forced because of my physiology not my unwillingness. 

So be it, I am now into the process of Intermittent CAP, imperfectly without a Rifampin challenge ,and quite hopeful knowing that for me I will continue to heal and feel, everyday in every way better and better.   Thanks for listening if you made it all the way to the end of this comment.  Louise

___________________________________________________________

6-07WheldonCAP CPnBb FMSⁱ-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxinⁱ

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tiniⁱ, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin

Louise- you've certainly put good time into the CAPⁱ and had much improvement to show for it. Perhaps we need to find some way to distinguish between intermittent protocol as an end point, and intermittent protocol as an alternative for managing with other medical factors, such as liver inflammationⁱ issues you have?

The link on rifampin you gave here, and some of the earlier discussion, is useful for this thread so folks can track through all the considerations about the choices here. 

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

Jim,

I wonder if using minoⁱ and tiniⁱ might work for liver issues (less porphyriaⁱ) vs doxyⁱ and Flagylⁱ?  Maybe you could discuss this with the medical experts that use CAPⁱ?  

___________________________________________________________

NACⁱ 2.4g, Zithⁱ 250mg/MWF, minoⁱ 200mg, Tiniⁱ 5day/1g/5 pulses, Valcyte
Supplementsⁱ, CFIDSⁱ/FMSⁱ, Hashimoto's, Psoriasis, PA, IBSⁱ, Sec Addisons

___________________________________________________________

JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, Armour Thyroid ERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<

Took a look at the link to DW website included above and the 14 day Intermittent was listed as the duration of the intermittent phase. The last update of this page on the site was Nov 08.

http://www.davidwheldon.co.uk/ms-treatment1.html  "The eventual aim is to give all three agents intermittently so that there is some respite from antibioticsⁱ. This, the final leg of treatment, may entail a 14 day course of doxycycline and roxithromycin, with a five day course of metronidazoleⁱ in the middle. This course is given once a month. After several months the intervals between the antibiotics may be cautiously extended. Rifampicin is not suitable for intermittent use, and azithromycin may be given instead. Here is a graphic representation of a possible course of treatment. The details will vary according to suspected bacterial loadⁱ:" (the graph is printed elsewere above in this thread).

 I also found the following paragraph from the Wheldon site updated on       Nov 2008 to be note worthy; 

"In treating the disease, it makes sense to use a schedule of antimicrobial agents which is effective against other potential pathogens of the CNSⁱ including Borrelia garini and B burgdorferi. These spirochaetes have been known to cause a serologically negative MS-like illness. Chronic infectionsⁱ with these organisms are generally difficult to detect serologically; the EIA test is particularly prone to giving false negative results. Chronic borreliosis may be much more prevalent than is now believed; B. burgdorferi has been identified in avian ticks infesting songbirds [Morshed MG, Scott JD, et al., Migratory songbirds disperse ticks across Canada, and first isolation of the Lyme disease spirochete, Borrelia burgdorferi, from the avian tick, Ixodes auritulus. J Parasitol. 2005 Aug;91(4):780-90.] and has been posited as a reservoir of borrelial infection in Europe [Comstedt P, Bergstrom S, Olsen B, et al., Migratory passerine birds as reservoirs of Lyme borreliosis in Europe. Emerg Infect Dis. 2006 Jul;12(7):1087-95.] Given the likelihood of chronic C pneumoniae infection causing a decreased efficiency of host systems, one might speculate that chronic C pneumoniae infection may prevent resolution of borreliosis. It would also make sense to cover for Rickettsiae and Mycoplasma sp. and cell-wall deficient forms. MS and other initially relapsing-remitting but ultimately progressive diseasesⁱ may have a polymicrobial phase: the punctured vasculitisⁱ caused by Chl pneumoniae would provide an easy portal of tissue-entry for blood-borne organisms. Microbiologists are beginning to recognise that, in many chronic infections, an altered host physiology provides a niche for a host of secondary organisms: an obvious example is chronic HIV disease, where the pathogen which initiates the disease is rarely the pathogen which causes the final event which results in death."

Thanks Michele for helping me to see that the Wheldon page had been updated recently, 3 months ago now.  Louise

___________________________________________________________

6-07WheldonCAP CPnBb FMSⁱ-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxinⁱ

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tiniⁱ, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin