Reaktionen der Forumsmitglieder auf die neue Variante

http://www.cpnhelp.org/stratton_protocol_revisio

und hier das neue Protokoll

http://www.cpnhelp.org/emerging_stratton_protoco

Stratton Protocol Revisions????

Submitted by padeyas on Wed, 2008-05-07 16:30. Antibiotics
hi everyone! this site seems to be growing daily and that it great!

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here is my current
Submitted by padeyas on Wed, 2008-05-07 16:31.
here is my current list-

Doxyi 100mg 2X’s/day; Zithro 250mg MWF; Flagyli Pulses; T3; Plaquenil; Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals; glutathione, b-12, MgSo4 and lidocaine injections

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Hi Keith, I just spoke to
Submitted by raven on Wed, 2008-05-07 17:38.
Hi Keith, I just spoke to him a week ago. The new protocol uses Pyruvate 4-6 grams 1 hour before any abxii. I am starting with Azith 250 a day. I was confused too. This is all new stuff. I guess the KEY is the Pyruvate–teases the little buggers out of cryptic mode and then you whup’em with the abx.
There is supposed to be less die off with this method. I don’t know because I’m just getting started.
I asked about the Levaquin (because of reports of tendon damage) and he said it wasn’t necessary.
As for the Biaxin vs Azith–either one will do.

Raven

CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi

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Keith- Yes, he is using a
Submitted by Jim K on Wed, 2008-05-07 17:39.
Keith- Yes, he is using a revised protocol. I’ve not published it here yet as it needs some explanation for the new approach and rationale and I’ve not had the time to pull it together. What your doc seems to be leaving out is the (crucial) use of pyruvate along with the meds.

There is a preference for the Biaxin in this approach because of it’s shorter half life, and you don’t have to worry about resistance since you are still on antibioticsi. I’m less clear about the levaquin rationale, and haven’t had the time to get enlighted further.

I am unlikely to have the time to pull together a cogent presentation for a couple weeks as I’m getting ready for travels, sorry, but I did want you to know that he has been experimenting with a revised approach based on a slightly different strategy.

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycini, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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Jim/Raven, thanx so much for
Submitted by padeyas on Wed, 2008-05-07 22:43.
Jim/Raven,

thanx so much for the reply, i appreciate it. dr P mentioned the Calcium pyruvate to me and i should have mentioned it since it is part of a possible new protocol. i do understand the rationale behind the pyruvate. i just didnt, nor do i still, understand why the switch to biaxin (from azithromycini) and amoxicillini (from NACi) and i really didnt understand why 1 month on, then one month of levaquin, then back to the biaxin/amox then 6 months of azithro/doxyi/flagyli. unfortunately, we didnt have a lot of phone time as we spent MOST of the time talking about fine tunning my thyroid. since i’ve switched to total T3 from the Armour i’ve had some major issues so when i wanted to ask about the abxii switch he basically just said it was what stratton was using @ Vandy.

Best Wishes,

Keith

Doxy 100mg 2X’s/day; Zithro 250mg MWF; Flagyl Pulses; Armour 1 grain; T3; Plaquenil; Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals; glutathione, b-12, MgSo4 and lidocaine injections

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I had a little ‚panic‘ when
Submitted by blackfoot on Thu, 2008-05-08 03:13.
I had a little ‚panic‘ when I saw this post. I’m just plodding away and now its up for change …. My brain says well its still experimental, we’re on the right track, and its good that things are changed when there are better ways of doing things. My heart says, oh no, have i been doing the right thing…..

Anyways, not to worry, patience is a virtue, and we will wait and see. Hope your travels are happy, Jim.

M.E./CFSi 20 years, intermittent. Wheldon Protocol – Started NACi and supplementsii Sept 2007. Doxyi and Roxy full dose by Dec ’07. First Flagyli pulse January 2008.

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Blackfoot, You’ve been
Submitted by MacKintosh on Thu, 2008-05-08 03:49.
Blackfoot, You’ve been doing the ‚rightest‘ possible thing, the only thing that’s been available to us until now. And it’s worked for so many of us, don’t forget.

If there are improvements to the protocol, they will be just that – improvements. If something makes what we’re currently doing even better, then wonderful!!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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Talking about protocol, I
Submitted by nino pranzo on Thu, 2008-05-08 03:56.
Talking about protocol, I have this question:
I get the impression that not everybody sticks to the 5 days per month Metroi or Tinii pulse protocol. Is it true?
I got no reaction from the last 5 days Tini pulse, so I wonder whether it would make sense to increase its length or its frequency. Thanks for your answer!

Nino: French Riviera, Cpni pneumonia june05 (misdiagnosed). Self diagnosed-treated. Sept.06 found doctor who confirmed Cpn, prescribed Zit 500mg every sec.day.I added NACi, supplementsii, metron.pulses, 200mg Doxi. Now I use Roxi instead of Zit.

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Many of us still use the
Submitted by Michele on Thu, 2008-05-08 04:24.
Many of us still use the original protocol as outlined in the Getting Started module above and we would still recommend that as the starting protocol. Once you have become familiar with the kind of reactions you get then other alternatives are possible, such as longer or more frequent pulses. Bear in mind also that not all pulses are equal, so a gradual increase of Flagyli is a good way to change your protocol as you are only adding one variable to it, and you can stop the pulse at any time.

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

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I was told to switch too. I
Submitted by lee on Thu, 2008-05-08 06:02.
I was told to switch too. I thought he said that the zithi was not strong enough to get all the extra bugs that are out after the calcium pyruvate.

zero negative sjogren’s diagnosed 2/03, 200mg doryx daily, mwf zithromaxi, flagyli every 3 weeks.

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Blackfoot- your response is
Submitted by Jim K on Thu, 2008-05-08 06:38.
Blackfoot- your response is exactly what I was worried about: people panicking and rushing to switch protocolsi when there isn’t wide enough experience with the new one. It’s one thing for Dr. Stratton or Powell to recommend it with a particular case he’s consulting on. It’s another to jump into it when it hasn’t been tested with all conditions. We know some predictable things about the existing CAPi’s. There are only a few doing the newer adaptation, and it’s important to be monitored with a new approach. So stick with the existing CAP and you’ll benefit from watching us guinea pigs report. Then you’ll have some data to decide.

CAP for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycini, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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i truly didnt mean to stir
Submitted by padeyas on Thu, 2008-05-08 15:44.
i truly didnt mean to stir up any controversy or questions about the current thought process of CAPi, but rather i just HOPING for some rationales as to why the switch.. to be honest, i would have prefered to stay where i’m at (with doxyi, azithro, flagyli) as the old cliche „if its NOT broke, dont fix it.“

in the meantime, i will DEFINITELY keep everyone posted about any affects/effects of the change in abxii.. i know the dosing schedule is much more of a hassle..

Best Wishes,

Keith

Doxy 100mg 2X’s/day; Zithro 250mg MWF; Flagyl Pulses; Armour 1 grain; T3; Plaquenil; Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals; glutathione, b-12, MgSo4 and lidocaine injections

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Jim and all – to add here my
Submitted by veressv on Thu, 2008-05-08 16:56.
Jim and all – to add here my little idea/mind it would be that you slightly change the approach once in a while, that will confuse CPNi. In this way it can probably not hide as effectively as it can in a usual therapy for a long term and also can reach different parts, tissues in a different way. I think it makes sense a lot. Only Jim i am wondering on your comment: „you don’t have to worry about resistance since you are still on antibioticsi“. Interesting thought. So until it dies, it wont be able to create resistance?

About levaquin(and fluorokin. in general). That agents actually kills CPN not only inhibits them like doxyi. or macrolides, so they have a better effect and a way different approach. (as far as i know)

I think the fluorokinolones would be one of the best agents but noone can garantee their long term side effects since there is no experience with long treatment with them.

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The thing for msi’ers to
Submitted by kitkat2 on Thu, 2008-05-08 17:13.
The thing for msi’ers to remember with the Fluoroquinolones is that they may cause an apparent pseudorelapse of nervous system symptoms.

A few years ago I took a 10-day course of Levaquin for sinusitis. My ms issues worsened enough to scare me into thinking I was having a real ms exacerbation, but luckily it was just a pseudo and I improved within a week of stopping it.

[Doxyi, Azith, Biaxin and Flagyli] for rrms since October ’05. Added Amoxicillini 1gm twice daily and LDN 4.5mg qhs October ’07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February ’08, EDSS was 6.5,

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KK2, Thanks for posting
Submitted by MacKintosh on Thu, 2008-05-08 18:30.
KK2, Thanks for posting that because you just KNOW there’s going to be someone experimenting without a doctor’s direction and it would scare heck out of them when it happened.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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JimK – Your new Stratton
Submitted by MacKintosh on Thu, 2008-05-08 23:34.
JimK – Your new Stratton Protocol page shows a boatload of code on the site page. Any chance it can be hidden?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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I’m new here and may not
Submitted by Keebler on Fri, 2008-05-09 02:52.
I’m new here and may not see it, but wonder where this page is? Can you point to up, down, over yonder, etc? – or the link? I’d like to be able to take it to my doctor for discussion on Sat. – Thanks

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Hi Keebler, I can’t find it
Submitted by Andesine on Fri, 2008-05-09 03:09.
Hi Keebler, I can’t find it either. Maybe Jim took it down. Mack? Jim?

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NACi 2400mg. All supplementsii. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

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Mac- it looks fine to me
Submitted by Jim K on Fri, 2008-05-09 06:33.
Mac- it looks fine to me on two browsers. I don’t have a PC, so it may be IE screws it up, as they don’t comply with internet standards (they are MICROSOFT after all). Anyone else having problems, note the browser you are using.

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycini, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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Jim you are right IE screws
Submitted by garcia on Fri, 2008-05-09 08:27.
Jim you are right IE screws it up. Firefox however shows it absolutely fine.

Another reason to switch to FF I would have thought.

CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg + Rifamp 300mg . 13 Pulses done. Sauna every other day. D 7200IU

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Page encoding is a problem.
Submitted by Andesine on Fri, 2008-05-09 09:06.
Page encoding is a problem. Copied and pasted? it’s using a different code….

Inflammatory Response in C57BL/6J Mice†

Liisa To¨rma ¨kangas,1* et al

INFECTION AND IMMUNITY, Oct. 2005, p. 6458–6466 Vol. 73, No. 10

hence all the weird characters.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NACi 2400mg. All supplementsii. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

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Good luck with that
Submitted by presacanario on Fri, 2008-05-09 02:36.
Good luck with that Levaquin; it kills tendons, maybe not in everyone but by the time you bust your achilles, it’s too late……

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Good luck with that
Submitted by presacanario on Fri, 2008-05-09 02:36.
Good luck with that Levaquin; it kills tendons, maybe not in everyone but by the time you bust your achilles, it’s too late……

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Levaquin caused major
Submitted by jeanneroz on Fri, 2008-05-09 10:30.
Levaquin caused major problems for me, personally. I will never take another floroquinoline and am surprised they are using it in the CPNi protocol. I know many others have taken it, but IMO it is a very powerful, overprescribed, all ecompassing antibiotic (that’s why dr.’s push it) that causes major problems in the body.

„If even only one person in 100 suffers a grave side effect of such a popular class of drug, that can mean millions of people affected. At their worst, fluoroquinolones can ruin or, potentially, end lives.“

Read this link: http://joun.leb.net/cox01122008.html

After just reading Jim’s post on the new protocol — I’d choose the Clarithromycin!

Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDSii/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts

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hi all, maybe you dont find
Submitted by veressv on Fri, 2008-05-09 03:36.
hi all, maybe you dont find the link (me neither) however Jim posted it in another book entry: http://www.cpnhelp.org/emerging_stratton_protoco

This explains a lot actually. It just wasnt clear to me about: Pyruvate. I read about this on NEt and there are several versions of Pyruvate. Calcium Pyruvate…etc. Which one should be used here? This is a key member in this new approach.

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Keebler. Thanks Veressv.
Submitted by Andesine on Fri, 2008-05-09 03:52.
Keebler. Thanks Veressv. Please note, it says

Please remember that this is experimental, and has not been clinically used with a wide array of Cpni related diseasesi yet, so should not be engaged in without a knowledgeable clinician to monitor treatment.

I would suggest this is not something to jump in on without guidance from Stratton.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NACi 2400mg. All supplementsii. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

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Thanks, Yes of course.
Submitted by Keebler on Fri, 2008-05-09 10:16.
Thanks, Yes of course.

It’s just I have to use 1/6 of my income just to see my doctor who is designing my treatment. Meds will probably be out of my own pocket, too. My other doctor, too, who may help is not easy to get to – and they don’t have time to keep up on research.

If I present something to them that is new it may be helpful – especially since I have challenges with some of the meds currently proposed.

So, if there are alternates or new thoughts, I want my money with my doctors to be put to the best advantage if new ideas, if they hold muster.

After being kept in the dark for so many years about lyme, as a former teacher and journalist, and as a patient who has nearly lost all patience with illness, I want to consider all the information possible – as soon as possible, even if it’s just someone wondering. Then the thought process and medical consults don’t miss anything.

So, in light of that, I so applaud those who keep this board going. This board is a gold mine of information. I know we are all in the discovery process.

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YEah of course. Consultation
Submitted by veressv on Fri, 2008-05-09 04:11.
YEah of course. Consultation is needed with your doctor that’s 100% sure. Also i notice the experimental phase.

However it’s nice to consider new ways and thinking about it at least. I would also hardly recommend to avoid steping in a new thing. Especially with this many new ideas in it. I am considering it seriously because i have a lot of experience with fluorokinolons, and they worked very fine for me without any side effects. However it can cause troubles as mentioned above. I am talking ONLY about myself and hoping that everybody is going to be CAREFUL and SLOW with all these things, bacause it is very serious and can mess up things….

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It makes me wonder about
Submitted by veressv on Fri, 2008-05-09 07:47.
It makes me wonder about Calcium Pyruvate. Calcium interferes with many other meds (i.e.:doxyi.) how can you take it just an hour before the abxii? Isn’t an issue? Or it is a different type of Calcium?

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I was recently diagnosed
Submitted by horses12 on Fri, 2008-05-09 09:29.
I was recently diagnosed with cpni by a lyme doctor. I’m a bit concerned with what medications she has had me on. Today I don’t feel like myself and am actualy anxious a bit. Can anyone give me advice on her protocol and what to expect? I started on Doxyi for one month and now I’m on Lavaquine 500mgs. for about two weeks. My symptoms are: shaky, confusion,low grade temp. Help…….

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horses12- please post
Submitted by Jim K on Fri, 2008-05-09 10:23.

horses12- please post your question seperately on a forum or as a blog post, and describe more completely what you are being treated for as well as what you are taking for it. Otherwise it will get lost in a thread on a completely different subject.

Others- somewhere in midstream I recoded the page from Word to html from an rtf document (hence some of the improper characters). It’s better and doesn’t add all the crap for IE users, but I haven’t had time to edit out the characters completely. I’ll get to it eventually. There is no easy way to convert a Word document to a reasonable html. Microsoft does everything in a proprietary way without regard to standards. I’ve about had it with Word for this reason, but haven’t found a word processor that does this better.

Dr. Stratton has not been concerned about the calcium in the pyruvate. From the literature I’ve read, the pyruvate is in the blood stream by one hour. As calcium only interferes with absorbtion in the gut of doxyi, there shouldn’t be any problem by that time. The difficulty I’ve had is more with needing an hour at least after my thyroid meds, then the pyruvate, then the abxii which I need to take with food. The timing is a real pain in the butt!

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxy, 300mg Roxithromycini, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3