Cpnhelp.org

i plead brain-fog ; )

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Brad, DXⁱ: ALS 2/06. EBVⁱ. Lyme tests negative twice... 14hrsInBed/Day. 
1/7/08 WheldonCAP started Suppliments& 1200mg NACⁱ
1/21/08 1xWk. Zithⁱ 125mg 63mg

I have to cut&paste, I have LIMITED USE of hands.

Jim K, Sarah: U can't argue w/ Sucess , MP heal lots of people by their own testimony. "under spell" is condescending, Plz ... I respected your protocol, views. I... am not prejudiced, are you? I'm here, have you honestly studied MP?

Re: 'Medical Doc. behind this protocol" - Most learned Doctors are against both CAPⁱ's, Yes?

I' m done w/ this topic. Pfffft!

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Brad, DXⁱ: ALS 2/06. EBVⁱ. Lyme tests negative twice... 14hrsInBed/Day. 
1/7/08 WheldonCAP started Suppliments& 1200mg NACⁱ
1/21/08 1xWk. Zithⁱ 125mg 63mg

Brad, do you by any chance have Cpnⁱ? I ask because whilst many here have considered the MPⁱ, no one has actually tried it full on (I don't think). It would be nice to be able to compare the two protocolsⁱ on the one organism.

I'd love to know how someone with Cpn would do on the MP as opposed to the CAPⁱ. I tried to do the MP myself but couldn't stand the way benicar made me feel (very very weak and lethargic).

garcia.

CFSⁱ since 01. Infected CPn 01-06. Started CAP 03-07.
Currently: Azith+Doxyⁱ. 4 Pulses done. Welchol 4xday. Sauna every other day. D 2,500IU

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Hunter: Don't think - experiment

Brad - First of all welcome!

Sorry these post got so - uhmmm - spirited in this thread.  There are very wonderful people on this site passionately fighting some nasty diseasesⁱ who have some definite opinions based on a lot of research and experience.  That being said, this is usually a place where you can openly share and discuss information, receive good ideas, tips and information and support.  Hope you will stick around!  

I don't know too much about the Marshall protocol so I can't comment on that but I am open to learning about anything.  My husband has a disease just as heinous as yours and quiet frankly if he could lick the skin on exotic frogs in the amazon to get better - we would be on the next plane down 

Good for you researching and trying as many things as you can! 

In researching my husbands illness, it seems that ALS is mentioned so many times in the same bucket as MS, etc... and is linked to a number of bacteria and virus as well as all manner of other potential smoking guns.  It's hard to know which way to go?  Sometimes for me it's overwhelming - the possibilities and things to try! 

Good Luck with your various treatments and Hope 2008 brings good things your way!

  Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPⁱ 5/10/07. Doxyⁱ 200 mg, Minoⁱ 100 BIDⁱ 9-1, Azi 375QD  Roxyⁱ 300 BIDⁱ 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Novantrone, Rescue Prednisone

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

With Marshall heavily censoring his website's forums, it's hard to know what the real success rate of his protocol is. But it's certainly something that can be argued with.

I have spoken to a few people who are on MPⁱ for my condition. Results were completely mixed. No clear answers. Some stopped because it made them so sick, others got better to varying degrees, no one made full recovery but they weren't done either. It was all over the board. But there was some Sjogrens patients to ask, here they are nonexistant other than me and one other person. I'm not even completely certain of what I am treating anymore.

 

31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAPⁱ since summer 2007 & Infrared TX. Doxyⁱ 2X a day daily 100mg each, Zithⁱ 250mg 3X a week, Flagylⁱ every 3 weeks for 5 days &

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31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAPⁱ since summer 2007 & Infrared TX. Doxyⁱ 2X a day daily 100mg each, Zithⁱ 250mg 3X a week, Flagylⁱ every 3 weeks for 5 days &

Thanks Jim K! Most enlightening!

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Brad, DXⁱ: ALS 2/06. EBVⁱ. Lyme tests negative twice... 14hrsInBed/Day. 
1/7/08 WheldonCAP started Suppliments& 1200mg NACⁱ
1/21/08 1xWk. Zithⁱ 125mg 63mg

Hi Brad W,

welcome to our site.  I am sorry to hear you have ALS, from what I know (which is limited) it is a nasty disease that eventually reduces a persons body to a useless shell.

Daisy is right, what way to turn, so much information.  She is medically knowledgable & a caregiver for her spouse.  I think she has been combining the WP with some other drugs as his disease was fast progressing.  A pullout all of the stops scenario.

If you have read her posts you will get lots of info.  Sarah's husband is Dr. Wheldon who with the help of Dr. Stratton & Jim K, Michelle & others actually spear headed this site.  That she is sensitive to the protocol widely practiced here is understandable.

Without this site, many, most assuredly, would be dead now.

For me, I am improving from a nasty downward spiral I was on.  This only 7 months in to what I suspect will be about a 2 yr adventure.  The CPnⁱ is a stealth bacteria, to be taken very seriously.  The scary thing is that a huge percentage of people my age have already been exposed to it.  I believe my initial bout with it was when I had double pneumonia - I was 19.

I take 9000 IU vitamin Dⁱ at the moment.  It's anti cancer boast more recently make it worthwhile for us.

Anyway, our site is the most AWESOME site because we speak pretty freely about what we are doing, experiencing.  It is a great source of support for many of us, without it, most doctors would be quite in the dark about this insidious bacteria.  It is wreaking havoc in our populations, what you can't see, can kill you.

No one here will take a large strip off of you. I have been kicked off another site just for telling someone what I was doing with the support of my doctor!

Blessings for your journey to wellness.

Peace

CFIDSⁱ/ME 25yrs, FMSⁱ, IBSⁱ, EBVⁱ, Cpn, (insomnia - melatoninⁱ, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACⁱ 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

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CFIDSⁱ/ME, FMSⁱ, MCS, IBSⁱ, EBVⁱ, CMV, Cpnⁱ, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsⁱ+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagylⁱ/day-5 days<

There is quite a bit of misunderstanding here about what the Marshall Protocol is actually doing. One of the defining tests they use to see who would benefit from the protocol is the ratio of 25(OH)D3 to 1,25(OH)2D3, a ratio greatly favoring 1,25 suggest rapid conversion. This has been the case with a majority (though not all) of Sarcoidosis patients, its also been demonstrated to occur in large numbers of Rheumatoid Arthritis patients as well. What that means for them is there is no way to keep these levels consistent, and if they are high enough, they will not tolerate supplemental D at all, or not for very long due to rapid conversion. The bacteria involved in most cases of Sarcoidosis seem to have picked up this gene/trick for making the conversion enzyme, and the people that are going to get the most dramatic benefit from Benicar are those which have bacteria that picked up the gene to accelerate conversion (and that accelerates production of D in the skin in Sarcoidosis). Its not that they don't use D - they use the receptors for it quite a bit. Because these people can not keep a consistent ratio without it quickly converting to 1,25(OH)2D3, they replaced D entirely with a drug, thats one of the functions of the Benicar as they use it. Benicar is a VDR agonist[vitamin Dⁱ receptor agonist] (with slightly different properties from D in terms of affinities and how hard it activates the various receptors it hits), once benicar gets above a certain level, its essentially replacing both forms of D in the body, and in the immuneⁱ system some parts of it are going to be very active because of it. For someone with too rapid of a conversion that is suffering AI problems because of it, they start to feel a lot better on the Benicar. The reasons they are so adamantly against taking D and the diet restrictions are in place is that ingested D, or D from prolonged sunlight exposure kicks the drug out, and several hormones swing rapidly the other way as well as losing some of the blockade against inflammationⁱ that benicar at high dose provides. The things to keep in mind, benicar isn't D, its a drug which replaces both forms of D - and helps bring those hormones it effects and others back into a fixed state. It does not behave quite the same way as either of the two D's across all of the receptors, but it does activate the VDR fairly strongly, but not so much its locked hard on, its controllable. Both forms of D have pronounced effects on things like thyroid hormones, those who experience the rapid conversion literally go through the full range of hypo to hyperthyroid during as it converts. Over about 5 hours for them. You aren't going to feel good during this, its not the thyroid hormones changing as much as it is both forms of D effect this and each form differently. With a drug like benicar in place, they don't get these storms, which make a lot of folks on it feel a lot better right away. As do some of the anti inflammatory properties. The benicar itself is modulating the immune system, as I said before, its not D, its a drug to replace it with some similar properties, it hits most of the same things, but its not going to have the same immune system effects across the board. Some are the same, some aren't, its a pretty radical solution in many ways, but the majority of those it was developed for (Sarcoidosis) couldn't tolerate D without getting sick from it. Other bacteria seem to be able to pick up the trait, and irregardless of what the AI disease is called, if the bacteria have it, a fair number of those people are going to be quite sensitive to it & experience a range of hypervitaminosis-D symptoms because of it. I'm one of those, I have neurosarcoidosis, which is a somewhat between having MS & Lupus in what it does. Any amount of D was problematic for me. A few days of 1000IU of D for me is a life threatening proposition. Even very small amounts were problematic. Something as benign as a plate of pasta with white sauce was enough to keep me awake all night, jittery, insomniac from the thyroid effects of rapid conversion alone, not to mention the calcium flare that would come with it. I'm on the far end of the scale as far as being sensitive to it. When I first became sick I wasn't as sensitive to it, over time I became much more so. The neurosarcoidosis symptoms became a lot worse as that happened. Even a half hour trip in the sun was enough that I would notice it. I would initially feel better in the sun, and who thinks of the sun as being problematic? 5-6 hours later I would start to feel lousy. It was not an intuitive connection, even with a high degree of sensitivity. Even with the food issues, it was not intuitive because of the initial period of feeling better (its a steroid), and the delay in feeling poorly from it. Its the degree of sensitivity that is an issue here. That most there have that high level of sensitivity & rapid conversion doesn't mean someone without the high degree of sensitivity would not benefit from the treatment, the MP study site uses it mostly as a screening tool to pick those more likely to benefit based on their current understanding & theory which includes a high degree of VDR activation being needed to clear some of these infectionsⁱ to bypass their defenses (like capnine). If these truly are persistent bacterial infections and they are vulnerable to the antibioticsⁱ and the way the immune system function is being altered, those infections should clear as well with it. If the species aren't vulnerable, have to try something else. A protocol like CPNⁱ is using other things to modulate the immune system, high dose D if you can tolerate it which does have some steroidal effects even in its D3 form, NACⁱ (which does have an effect on slowing down the conversion of D, and some evidence it may reduce production in the skin, as well as several other interesting properties), high doses of C...etc.. Much higher doses of antibiotics. It makes sense to me why the doses of antibiotics are very different, but still arriving at many of the same end points because of that. The other reason they are so adamant against supplementsⁱ is because they are trying to get a treatment FDA approved that is somewhat complex. The fewer things at issue, the less chemicals used, the fewer problems interpreting the data. The Marshall Protocol is still an experimental treatment, it was phase II for several of the things it was being tried for the last I looked. They do not know every interaction that can occur, nor how supplementsⁱ would effect immune system function on it as the treatment very radically changes immune system function. Anyone who can get a copy of the full protocol & find a doctor willing can use it, but the message board itself is for the trial & is largely limited to that topic. They try to ensure compliance because thats what the requirements are for running a trial. Its not a democracy on the site, its a treatment study. I hope that clears up some misunderstandings. I've seen this discussion here several times, but never seen anyone take the time to really answer the questions that were asked.

Well, I'm highly in favor of everyone being free to choose whatever treatment they like, and to run a message board however they like. I will freely confess that I polemicized against the MPⁱ in years past, but I no longer have a polemical atom left in my body. I am devoutly objective - be it a virtue or maybe just a state of neurometabolism - and a very happy scientific robot. I will just point out that some of the things you mention are what I, personally, would call speculative:

The bacteria involved in most cases of Sarcoidosis seem to have picked up this gene/trick [...]

once benicar gets above a certain level, its essentially replacing both forms of D in the body [...] [not everyone seems to be confident in in silico determinations; I'm far from expert on the subject but see these several posts and comment: http://pipeline.corante.com/archives/in_silico/ ]

Both forms of D have pronounced effects on things like thyroid hormones, those who experience the rapid conversion literally go through the full range of hypo to hyperthyroid during as it converts. Over about 5 hours for them.

If you don't think those are speculations, theories, preliminaries, or whatever, I won't try to convince you. If you think they are, then I will say that theorizing is essential (what is now prov'd was once, only imagin'd)... it's just that the great bulk of it doesn't come out in the end. Try reading a few issues of the journal Medical Hypotheses - ten thousand ideas... each one more than sane... yet precious few will ever be borne out empirically. We desperados all select certain theories to act on, alongside certain observations, but... “Tell me what you know, then tell me what you don’t know, and only then tell me what you think. Always keep those three separated.” I myself have failed in that repeatedly, but I keep trying to remember it.

I am one CAPⁱ patient who has been following the MPⁱ since it's inception. I have followed every patient who started with Trevor. It is important to remember this: NONE of them are cured. Even Trevor is still on Benicar and low dose abxⁱ. Meaning, we do not know that it is a curative protocol. There is NO EVIDENCE suggesting this is so (as he claims). Many patients (who have been on it since the beginning) are better, but far from CURED, and are still having many problems. What I have seen on CAP is that some (after a few years or so) are back to their lives and OFF THE ABXⁱ. I, for one, am back to hiking (from barely walking without complete exhaustion) and working full time, socializing etc..after 1 yr on CAP. I still have 1 abx to add but have come A LONG WAY and am thankful. I am not pointing fingers, only looking at objective evidence and deciding what is best for me. Be well all. Chris since 11/06 for CFSⁱ. Cpnⁱ, Myco P, CMV, HHV-6 infectionsⁱ. Doxyⁱ 200mg daily, Zithromax 250mg MWF. NACⁱ 2250mg daily. All other supplementsⁱ.

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CAPⁱ since 11/06 for Cpnⁱ, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsⁱ. Rifampin 600mg daily, Zithromax 500mg daily. NACⁱ 2250mg daily. All other supplementsⁱ. Now Bicillin LA 2.4 mil injection weekly.