Cpnhelp.org

Google ads is also one possible way to go.
How much traffic are we talking about ? Any statistics

How many are registered users?
What If unregistered users receive som ads ?

Personally I don't like distracting object as I have a hardtime reading cpnhelp.org anyway it's to many blocks of information that my brain need to handle.

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/Per ----- Chronic Neuroborrliose,abxi+E-vimin+selen+Q10+B12 antrophsofic medicin and therapy. First I was afraid, I was petrified Kept thinking I could never live,Oh no, not I
I will survive

We did not like the idea of google adds because we had little control of which ads would appear on our website.   This options is maybe more controllable.   We can decide who to deal with.

We have about 400/500 members.

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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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

iherb is a good company. Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgiai, interstitial cystitisi, sinus: minocycline, Zithromycin, Flagyli, Valtrex

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Hi Michele, I know it costs to maintain the website and that some of the people who need the site are not financially well off because illness cuts in to the ability to work and earn. However, I hate to see the site turn to ads which I'm afraid might somehow start bringing in bias. How about promoting the idea of regular contributions from those who can afford it? I've talked with two who are willing to make a monthly commitment. On CAPi since June 2006 for high blood pressurei, nasal allergies, restless legs, memory and cognitive problems. Currently: Doxyi 200 mg/day; Azith 250 mg 3X/wk; Flagyli pulses every three weeks 400 mg 3X/day for 5 days

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On CAPi since June 2006 for high blood pressurei, nasal allergies, restless legs, memory and cognitive problems. Currently: Stopped daily treatment in July 2008 and am now taking three weeks of the CAP antibioticsi (doxyi 200 mg/day; azith 250 mg. M-W-F; Flag

I agree, that ads are not a good idea, but the option I am writing about is slightly different in that we receive a commission on things that members on this site might want, such as vitaminsi or books. 

It would be great to think that we could raise enough funds by voluntary contributions but I anticipate that only a limited number of people will be able to do that.   Quite a few people as you say are not able to work, and in this country most people are having to buy their drugs themselves, which means not much spare cash for the website.... 

We have managed up to now, and probably will continue to manage even with limited funds, but it would make the website easier to navigate and search if we can do some regular housekeeping.  

Its great to hear all your ideas; we will not be doing the google ad bit... lets see what else we can come up with. 

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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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

I have probably said this before, so sorry if it is repetitive. Maybe we could set up a "no brainer" basic recommended CAPi supplement list on all the major vitamin websites. This way newcomers could be referred to seek out the list at their favorite supplier. This would also provide convenience to fellow CAP'ers who are overwhelmed--I would have welcomed it back when I started the CAP and supps. At checkout, they could include that CPNHELP.ORG referred them and then an agreed percentage of purchase price could be sent to the webmaster here. Kind of the way that the pink ribbon attracts donations. Kind of.. **or....a dream idea** We could all invest in production of a daily CAP cello-wrapped combo of the recommended supps....further making it easier to comply successfully with the protocol. A 30-day supply could fit in a cake-mix sized recyclable box--and would be lightweight for shipping. ?? kk2

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

KK2, I don't think I have heard of your idea before. Sounds really interesting and helpful. The idea of producing a prepacked daily supplementsi pack would save me hours of careful distribution. I suppose the only disadvantage of this is coming up with a basic pack that will suit the largest number of patients.

The idea of raising funds through commission feels much better to me than being hounded by pop ups and flash adverts. It might take some organising though and I can't see myself doing it from this country.  

Maybe the first thing to do would be to see if other people think this is a good idea, then someone state side may be willing to do the preliminary enquiries about the commission and the prepacked supplement.   Even placing the list of supplementsi with Iherb and Vitacost would be helpful and maybe the first thing to do, I can't see any objections to that as most of us buy from these two suppliers in any case.   It still leaves people free to make up their minds and does not put undue pressure to buy.  

I would suggest that maybe there are two lists, one of essential essentials, like NACi, Vit D3, B12, ALA, ALC, coQ10, etc and one that also contains Vic, E, selenium, Cal/Mag, EPO, Omega 3 etc, so that those of us who live in other places than the States can choose to buy their locally available products if they choose to.   Any other thoughts???

It would be great to achieve some of these goals... 

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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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

Michele, I think t-shirt or sweatshirt sales with a professional looking cpnhelp.org logo might be useful as well. I would proudly wear one especially to crowded events where we might be able to reach more people who are not yet aware of the capi. Of course, those in charge here would need to okay it, but as long as the logo was small, clear and tastefully done it might attract more people to the site. This might in turn bring in more potential donations. Or there could always be an annual drive for donations from site members. Just some more thoughts--sorry if I am going overboard. I'm just a creative idea person. -kk2

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

KK2, you are not going overboard, sounds like great ideas, the more the merrier I think.

T-shirts together with the bumper stickers that we thought about earlier and other similar products could be another string to the fund raising bow.

I can see though that it would have to be a job that someone took on, because designing and printing t-shirts and bumper stickers would be just the beginning, we would then have to sell them and post them off... An annual fund raising is another good idea, but again would require someone to organise it and run it. Not saying it can't be done, it depends if there are volunteers out there to do it. It would have to be a project that someone was prepared to develop and set in motion, any volunteers...

Not me I'm afraid, too much on my plate at the moment, although I could manage the design element if no one else wanted that part of it. Maybe these could be team projects. I'm sure that distance team projects have been done before...

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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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

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And it involves a lot of work and needs volunteers to make it happen. The advantage of these concrete ways of fund raising is that they spread the message.   We could always consider more than one way of fund raising, it all depends on what our members are prepared to do...

The easiest way of fund raising is to get members to make voluntary contributions. There are several issues that I can see about that:

1.  Not all members are able to make such contributions.   How do we find out whether enough money can be raised this way?

2. Can we make these contributions tax deductible?

3. Can we set up a direct debit facility so that we can automate the donations?

 

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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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

You can find out how to hook into Amazon.com by looking at http://affiliate-program.amazon.com/gp/associates/join. 

 

Another suggestion is to add new tab(s)  called "Friends of Cpnhelp" or "Recommended Items" (ie like forum, physician's page, image gallery, etc).  On the "friends" page provide a list (and link) to any company that will contribute a donation. You might group them by year and size of donation (ie 0-$100, $100-$500 etc).  Large non-profits tend to acknowledge donations this way.  On the "items" page, list any company or lab willing to donate with  their contact or link info. To assist users looking for the info, it could be grouped by online drug stores, supplement manufacturers, drug companies, testing labs, support equipment(ie saunas) etc. This would also be the page where you'd list recommend books and provide the hook to Amazon.com (or others).  Given this equates to more direct advertising and business for them you may set a minimum donation requirement and ask for an annual donation to remain listed.

Once the website is ready, send out a letter/email to the various companies requesting a donation. Also, make the info on how to get listed on the site public so we can forward it to anyplace that we might know of to help spread the word.

CFSi-2004

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CFSi-2004 CPNi 2500mg NACi daily

Thanks CFSi for the information I will cut and paste it for future reference.   We will have to make a policy decision before doing anything more concrete.

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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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

How much money are we talking about ?
How does the cost occur ?
And how is the cost related to Traffic dependent, fixed ...
Can people like me be of any help ? What skills are needed ?
/Per

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/Per ----- Chronic Neuroborrliose,abxi+E-vimin+selen+Q10+B12 antrophsofic medicin and therapy. First I was afraid, I was petrified Kept thinking I could never live,Oh no, not I
I will survive

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At the current rate, donations are coming in and have built up the kitty enough to support maintenance and any emergency web consultant time. So we have backup, and people seem to give something regularly now that it's easier to do.

I have my eye a bit more towards the future when the Vanderbilt Chlamydia lab will be up and running. Yes, this is in the works, although the timeline is unclear. When that happens, we may wish to raise some money to support specific research projects, and any and all sources of income might be considered then. At that point, I'd also like us to fiie for not-for-profit status, so that taxes and such aren't an issue. Any lawyers in the bunch who might donate some time for this? Might be worth getting a plan together in anticipation. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyli daily (Continuous protocol)

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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

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I'm note sure about the IRS, but in this country if you don't make a profit, in other words if all or most the money that comes in goes out again, you don't pay taxes. ThisisMS has google adds on their website, so maybe they overcame the problems in a different way. I'm involved in a not for profit organisation which is not a charity, but that was very easy to do in this country. Filled in a form on the internet and paid the registration fee and that was that. Maybe it is registering as a charity which is cumbersome. The advantage of being registered as a charity is that people who donate can claim that back against their taxes.

Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Cap Started 16 March 2006

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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 Jim - This is Alyson, Karl's wife. I lost my password some time ago and so I am writing under Karl's account. At any rate, I am an attorney and have applied for and recieved 501(c) status for several local churches. I would be happy to assist with applying with 501(c) status for cpnhelp.org; however, I think we should discuss this in more dept via the telephone or a PM as Sarah is correct, attaining 501(c) status in the US can be quite complicated. Michele, with respect to your comment, in the US it is fairly simple to incorporate as a non-for-profit corporation, but much more difficult to attain 501(c) status (the term "501(c)" is the term used in the US to refer to a charity that is registered with the IRS). You are correct, 501(c) status in the US is important because our federal tax code provides that an individual who makes a donation to a 501(c) charity is entitled to a deduction on their personal income taxes in the amount of the donation. Therefore, people from the States are much more inclined to make a donation to a 501(c) charity rather than to an organization that does not have 501(c) status. Alyson A.

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Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi 5/4/06.  CPNi past and new chronic infectionsi.  Lyme suspicious titers and Babesiosis found.  Started CAPi 6/1/06.

Thanks Alyson, for your information.   It's a great thing to be part of such a skillful and knowledgeable community.   What can't we achieve together....

Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Cap Started 16 March 2006

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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

If you ever become a non-profit, this website might be another way to earn some money - http://www.goodsearch.com/About.aspx

CFSi-2004 CPNi 2000mg NACi daily

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CFSi-2004 CPNi 2500mg NACi daily

Good Ideas,

For a number of years we have been purchasing supplementsi of good quality & reasonable cost from American Nutrition and Vitamin Research products.  Perhaps inquire there as well?

My best wishes & thanks to all involved in keeping this site.

With Christ in Faith

Ruth 

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days

I am AMAZED at Vitanet. I have been buying vitaminsi and supps for almost 40 years, and for the last 5-6 online, and NO place comes near the prices and quality of Vitanet, in my opinion. I would never have found it without the link from NACi to Vitanet, where it can be purchased. I nopw order ALL of my vitamins, for dogs and people, from Vitanet.  I think that if cpnhelp were to choose only one business to feature with ads, it would result in less confusion and traffic on the site and it would be an added incentive to the business as well. Because it could quickly get out of hand if more than one business at a time had ads all over the place.  Maybe put it up for grabs once a year, to be renewed, or replaced by another business.

Diana

I flat-out HATE the idea of affiliating with a business.  No matter how good, it comes with so many implications and complications.  Can't we just thump everyone to donate at least five dollars a year?   I'll even start the topic.

 

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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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

Being a newbie, I may be totally out of line, but "oh well" I'm going to voice my opinion.. I would hate to see this site turn into an "about.com" --- do any of you who have thryoid problems remember Mary Shomon's website in the mid- to-late 90's )(before she got into making money??) It was a wonderful source of information for thyroid patients (just like this resource is now.) I don't really know who started this site (Jim K.?), but I personally think it should not be affiliated ...for whatver it is worth,I agree with Sarah:

"As a member of the CPNi Oversight Committee, I can say that Jim is quite happy with the way things are at present, people who can afford to donating what they can when they can, so no problem really........Sarah"

We definitely need to get the "word out". I feel research dollars are not going to be spent to prove that 3 typical antibioticsi WILL and CAN cure alot of controversial diseasesi. I get angry because it is greed, ego and medical/pharmaceutical political B.S.!!!

If I had not found this website, I probably be losing my mind about now. I plan on contributing whenever I can. This site (and all of you) saved my sanity and probably my life!

 

Jeanne: Diagnosed 4/2007 w/ CPN, HHV6, EBVi, Fibromyalgiai & CFIDSi "symptoms" - previous issues: bronchitis/sinus; kidney infectionsi; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism - Azith 250, 1x/wk (started 5/8/07)

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Jim has no intention of affiliating this site with any business, as it would mean a change in status and a lot of book-keeping and legal stuff.   From what he said earlier we seem to have enough money to maintain the website.   Funding research is another matter entirely.

Jeanne like you, I contibute to the funds out of gratitude and thanks.

Michele (UK) GFAi: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

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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, Michele,

Thanks for the affirmation and I apologize for my tangent... I wrote this before I completely read through all the different posts.   

Jeanne: Diagnosed 4/2007 w/ CPNi, HHV6, EBVi, Fibromyalgiai & CFIDSi "symptoms" - previous issues: bronchitis/sinus; kidney infectionsi; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism -  Azith 250, 1x/wk (started 5/8/07)

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

I think it would be nice if we were a registered not for profit & could get tax break on donations in our respective country we are taxed in.  Does anyone know if it is easier to accomplish this in Canada?  I wonder if we can register in the country of least resistance? 

I see there has been some free legal advise already so perhaps we can just stick with that.  Just some thoughts from a rookie.

Blessings

R

CFIDSi/ME, FMSi, IBSi, EBVi, Cpni (375 mg Metroi, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, starting NACi

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days