MediTest
Body

Doing some work to try to provide a better support service for newcomers, has caused me to follow up leads given to us by members over the last few weeks. One of them was http://www.lymenet.org/

Comments

pts

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.
/Per ----- Chronic Neuroborrliose,abx+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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

iherb is a good company. Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline, Zithromycin, Flagyl, Valtrex

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

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 CAP since June 2006 for high blood pressure, nasal allergies, restless legs, memory and cognitive problems. Currently: Doxy 200 mg/day; Azith 250 mg 3X/wk; Flagyl pulses every three weeks 400 mg 3X/day for 5 days
On CAP from June 2006 to July 2008 for high blood pressure, nasal allergies, restless legs, memory and cognitive problems. On intermittent CAP from July 2008 to August 2009. Currently: using RIFE Machine and under treatment with a Naturopath, symptom free

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 vitamins 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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I have probably said this before, so sorry if it is repetitive. Maybe we could set up a "no brainer" basic recommended CAP 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 [Doxy, Azith, and Flagyl]  for rrms since October '05.  EDSS was 6.5, now 5.5.  United States.

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG'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 supplements 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 supplements 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 NAC, 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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

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 cap. 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 [Doxy, Azith, and Flagyl]  for rrms since October '05.  EDSS was 6.5, now 5.5.  United States.

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG'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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I must say that I agree with Blackeyedsusan about making a regular contribution.  T-shirts and bumper stickers are fine, but at the end of the day very little profit is made from them, so a plain contribution would make more sense.  Besides, if someone can't afford to contribute, surely they can't afford to buy a T-shirt.  A couple of years ago I did say that I might buy a T-shirt from ThisisMS, but I went off the idea for this reason.  Instead I just gave them some money......Sarah   An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

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.

CFS-2004

CFS-2005 CPN 2500mg NAC daily

Thanks CFS 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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

pts

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
/Per ----- Chronic Neuroborrliose,abx+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

As a member of the CPN 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   An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl daily (Continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim, you might care to write to Arron at ThisisMS about this and the problems involved.  I think they were thinking along the same lines, but it proved either too costly or too cumbersome to implement........Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Cap Started 16 March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

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.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

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 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Cap Started 16 March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Good Ideas,

For a number of years we have been purchasing supplements 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 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

I am AMAZED at Vitanet. I have been buying vitamins 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 NAC 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

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 CPN 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 antibiotics WILL and CAN cure alot of controversial diseases. 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, EBV, Fibromyalgia & CFIDS "symptoms" - previous issues: bronchitis/sinus; kidney infections; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism - Azith 250, 1x/wk (started 5/8/07)

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

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) GFA: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Hi, Michele,

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

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

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

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

CFIDS/ME, FMS, IBS, EBV, Cpn (375 mg Metro, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, starting NAC

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<