Nelly- Thanks for finding this. We have the first study in the forum somewhere, and it is an important finding indicating some of the genetic susceptibility factors for Cpni [13]. APOE locus has also been associated with Alzheimer's, heart diseasei [14], and some other Cpn related disease. It may be why some of us have such a blasted hard time getting rid of Cpn when our cells are set up to be virtually magnetic for those damned little EB'si [12]. Does this argue, for those of us with this mutation (probably discernable from family history), that the NACi [15]/Amoxi side of this treatment should be given more potency? It may be that for this subset of Cpn patients killing the EB's may be more critical and require more dosing than the RB or Cryptic side of the treatment.

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CAPi [16] for Cpni [13] 11/04. Dx: 25yrs CFSi [17] & FMSi [18]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [19] 1000mg/day pulses; Vit D2000 units, T4 & T3

I'm one of those who are having a harder time getting rid of Cpni [13]. I also have mercury issues (also thought to be associated with APOE4). I was sure that I would be one of those with this genetic mutation, so I got tested. Turns out I am E3/E3 - i.e. I am a total "norm" at least as far as APOE is concerned.

I think there are a whole heap of genetic factors out there which determine predisposition to chronic illness, the vast majority of which we are totally unaware of. I think the importance of any single gene - e.g. APOE is probably overstated.

 

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Hunter: Don't think - experiment

Yes, Jim, and Garcia, I am quite sure you are right, I get the feeling that if we could really monitor what is going on re EBs ie where the little buggers are hiding, in what numbers,monitor how they/we react to the various components of the CAPi [16], we could make our own tailor-made CAPs that could possibly get us there faster or better. I had given up on amoxi bec it caused bad drops in my neutrophils, I don't really know why. I am taking a short course of it right now. We'll see what happens I started NACi [15] about a year ago had NAC 'flu with plenty of draining back and front of the nose in the first few weeks. Now I am up to 4X600mg/day, no more NAC 'flu.

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Nelly (France-neuroLyme and ????)

Nelly- Have you had a trial of Rifampin? This is one Dr. Stratton seems to like very much for it's antichlamydial potency, as well as for the particular part of the life cycle it targets: conversion of EB'si [12] to RB's.

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CAPi [16] for Cpni [13] 11/04. Dx: 25yrs CFSi [17] & FMSi [18]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [19] 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim, I have taken nearly every abxi [21] under the sun except rifampicin, not game enough! Everybody I know who takes it/has taken it has suffered with it and after several years battling my ménagerie of bugs, I have had my fair share of suffering with various treatments (incl anti-protozoals the effects of which were incredibly hard to take) but somehow I seem to be baulking at the thought of rifampicin, strange quirk, I know ;) If you have any particular reasons for believing it would do better and bigger things than all the other abxi [22], please let me know as I could be convinced! Nelly

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Nelly (France-neuroLyme and ????)

Nelly -

My husband has been on Rifampin 600mg once daily since November.  I think it has had a very positive effect for him and has been well tolerated once we got past the first herx.   The only downside I can really say is that it stirs up the porphyriai [23] dragon.

Since you also have lyme - double bonus - Rifampin is good for the TBI's.

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Daisy - Husband on CAPi [16] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks Daisy, I'm not seeing doctor until Nov. but I will definitely start thinking about rifampiccin for my next visit

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Nelly (France-neuroLyme and ????)

See this paper [24] for a finding that rifampin hits a part of the chlamydial growth cycle that other antibioticsi [21] don't touch.

Thanks Norman, I will be looking into this for my next doctor's visit. I wonder if using Rifampicin means FASTER results but that might also be achieved with say the doxyi [25]+macrolide with nitroimidazole in pulses? Using the imidazole seems to be the "missing link" that no other regimen seems to be using. I just wonder if the rifampicin is necessary for some people. I realise many here use it, I wonder if you are willing to go more cycles, you will eventually get there without it (sorry, I am sure this has already been discussed but I don't follow here on a very regular basis)

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Nelly (France-neuroLyme and ????)

NellyP, from what I have read on this site, it may be kinder to you experience to start with the Doxyi [25] and macrolide then after several months  progress to the nitroidazole pulses doing this for for about 6 months and then if it seems like the right thing for you go on to replace doxy with Rifampin.  Just my humble opinion (JMHO).

Louise

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Louise  CFSi [17], CPN+/Bb+,Wheldon CAPi [16] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [23] & Endotoxinsi [26] PRN, Doxyi [25] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Nelly- I echo Louise's comment. I suspect that early use of rifampin may speed up the process, but... if you are having difficulty tolerating the Wheldon CAPi [16] then rifampin will really be a slam, without the dunk! I'm still unable to tolerate staying on it, but may have to bite the bullet one of these days and gut it out. Clearly the nitroidazole is the key addition that makes this thing work rather than, as Dr. Powell has said, just chasing the bug from phase to phase with antibioticsi [21]. We may get clearer on reasons to initiate treatment with Rifampin as we learn more, I'm thinking of Sriram's protocol as an example, but some of us have to work up to it.

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CAPi [16] for Cpni [13] 11/04. Dx: 25yrs CFSi [17] & FMSi [18]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [19] 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim and Louise, As you may have realised, I have not got my abxi [21] regimens into my signature, that's because I have been treating this "infectious cocktail" for more years than anybody I know. I have been using combined antibiotics for years, and I think I have saved my life (so far :)) by doing so, not well but got over the very worse life threatening symptoms (cardiac and neuroi [28]). If I were to write up my various successive regimens up, it would take up so much room that's all you'd be seing on the posts: Nelly's history and successive abxi [22] regimens. So, in short, ramping up is behind me, in fact that's one of my "achievements", I can now tolerate abx I couldn't possibly take even a tiny amount of early on in my treatment (like doxyi [25] for eg. I have (definitely HAD) Lyme, and other Tick-borne infectionsi [29], but I also have abs to Chlamydia pn and I used to be plagued with constant respiratory infections especially when I was still pushing myself stupid to keep on working. Rifampicin is probably one of the very few abx I have not taken, hence my interest. In fact I am reading everybody's experience and reasonings here with great interest. Sorry I can't really share with you all, all I have been through and all I have done to survive, but believe me I have been through many of the things you are all experiencing with the CAPi [16].

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Nelly (France-neuroLyme and ????)

Nelly- I know whereof you speak, as you were part of the old infectious/immunei [30] yahoo group that I was part of, along with Rich Von Kronenberg, Bleu and others, when I discovered I had Cpni [13] and then started Cpnhelp! A long time ago. That's why I've always been glad to see your contributions here. I also know what you mean about how long it took to tolerate full regimens. Whether it is the poly-microbial aspect of our problem for some of us, or the multi-system extent of our infection, or other factors, some of us in the CFSi [17]/ME range appear to require a slower course of treatment because of the severity of our initial reactions. Like you I feel clearly that antibiotic treatment saved my life. I actually have a life now! Even though I hover at 70-80% improvement and still react (mildly) to the CAPi [16] meds. I still suspect that Rifampin would be the addition that could take me the next step.

By the way, one of the things that made a big difference was the use of INHi [31] for at least 2 years. Even at 150mg a day, half the general 300mg dose, it made a big difference in my immune functioning and brought me from 50% improvement to 70%. In the original Stratton/Mitchell patent work INH was the fastest in clearing macrophages of Cpn. You might try pulsing it with the flagyli [32], as Dr. Stratton has suggested.

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CAPi [16] for Cpni [13] 11/04. Dx: 25yrs CFSi [17] & FMSi [18]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [19] 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim, I remember you well and I know you remember me from those days, I guess I was mainly replying to Louise's suggestion I could ramp up my abxi [21], starting with doxyi [25], macrolide etc. hmm....INHi [31] and Rifamp, 2 new things to run past my ID doctor in Nov. He is a bit of a TB expert, so I know he's used both these drugs a lot. Can't wait for the fun to begin :)

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Nelly (France-neuroLyme and ????)

Hello NellyP, I do not know you not from you past treatments and communications here or elsewhere.  When in doubt I err on the side of conservative progress for folks asking for feedback on CAPi [16].  Overly agressive treatment needs to be weighted well and judiciously taken for many of us CFSi [17]/ME, Bb to avoid being so overwhelmed that treatment is ended.

I've been reading these posts for the better part of a year and have seen your name several times, you could have been touching base rarely and thinking on starting for a good long time before doing anything about it for all I could tell.

Wishing you a lack of "fun" on Rifampin, just a managable healing journey.

Louise

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Louise  CFSi [17], CPN+/Bb+,Wheldon CAPi [16] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [23] & Endotoxinsi [26] PRN, Doxyi [25] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Jim, Is there anyway to expand the size of the signature that is allowed?  I would do well with about 2 more lines to say what I want to communicate?

Louise

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Louise  CFSi [17], CPN+/Bb+,Wheldon CAPi [16] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [23] & Endotoxinsi [26] PRN, Doxyi [25] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support