Sunni - My own mother is a great example of this.   I believe she is toxic with CPNi [1] (and not lyme).  She is to me a textbook case of systemic CPN infection. 

She is a scientist and healthcare professional.  She has read what I have given her.  She gets it to a certain degree.

She doesn't want to take antibioticsi [3] long term.  She views them as more harmful than suffering with the numerous CPN issues that she has.  This despite observing the astounding changes in my husband this past 12 months.

I once interviewed an asthmai [2] patient as part of a preceptorship.  The patient was on 7 medications, had suffered from asthma her whole life, the asthma had affected every aspect of her life, she had bronchial mucus plugs she stuggled to cough up that could only be described as severe.  She had been hospitalized over 30 times with her asthma.

This patient, when asked by one of the students in the class, how severe she saw her asthma - answered - pretty mild - I am lucky and am not really that sick.

Sometimes the horse, doesn't really realize the horse is sick.

___________________________________________________________

Daisy - Husband on CAPi [12] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Sunni, it is incomprhensible to me, too. I refer people, and tell them it is not easy, but incredibly rewarding in the end. I answer their questions about what it entails and also tell them I may remind them ONCE and will never mention it again. That is more a self-protection than anything else.

___________________________________________________________

 

Rica PPMSi [13] EDSSi [14] 6.7 at beginning - now 2. Began CAPi [12] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [6] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [5] total 55 pulses LDNi [15] Rifampin 8/08 again NC USA

I think people are so conditioned to think a certain way about things that even clear logic can't override their beliefs. The first doc to prescribe me abxi [3] was an allergy/asthmai [2] doc. He gave me just one month of azi and then, even after showing significant lung function improvement, he asked me if I really wanted to continue for another month of abxi [16]. He asked as if I was going to do something really dangerous like try to cross the Atlantic on a surfboard. I asked, wouldn't you want to continue if you could possible cure your asthma? He actually said he didn't know if he would, if he were me. He said he'd probably just go on a steroid inhaler instead of trying abx. Mind you, he was only going to give me 6-9 weeks of azi anyway because that's what they did in the study he'd read about. So we're weren't even talking long-term abx at the time like people do here. I'm thinking, huh? A couple months of abx vs. a lifetime of inhalers? How can anyone even consider the latter for one second? I can only guess people are soooo conditioned to think abx are evil things that will kill you that their diseasesi [17] and medications seem somehow much safer by comparison.

 

___________________________________________________________
GFAi [4] - asthmai [2], sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli [5] pulse started June 30, '08. Added Doxyi [6] 200mg/day Aug 16.

I have also experienced this in bucket loads - i know two people who have servere panic attacks which are probably one of the easiest things to cure with NLP - neither of them made an appointment to the guy i put them in touch with and still suffer panic attacks to this day.

I posted a huge link on a forum about the protocol i am on to treat CPni [1], crypto and borrelia as a treatment for CFSi [18] - i think 3 people actually asked about it - out of a potential 1000+ even though everyone i know who is doing the treatment is now going out and loving life again.. maybe people just think its another snake oil cure?

My dad is very poor of hearing - i have offered to buy him a very discrete hearing aid - he refused and yet complains he cant hear anything everyday.

My mum does not sleep much at night - i have a brilliant course on insomnia that could help no end.... she does not want to know.

I think it can be difficult for people in our position who are very proactive and want to make our own lives better - i go through stages of wanting to save everyone else too - I accepted quite a while ago now that there are not as many thirsty horses out there as i once thought - i assumed everyone would take action to make their health better - but in reality very few do - we should provide as much water as we can in as many places as we can - ultimately though its upto the horse if they want to take a drink.

I am sure there are horses out there who are very very thirsty - and who just cant find the water and do not know where to look... I know i was one of them 2-3 years ago. Rest assured everything that gets posted here and in other forums does help some people/horse... we just have to accept we cant save them all....

___________________________________________________________
Paul UK.CFSi [18]i [19].CPni [1]/Crypto/Bor. Ivermectin.May08.NAC1200mg.Doxy200mg.Azith250mg(MWF).Omeprazole40mg,Flagy pulses 800mg/

Daisy-I really love the last sentence!!

These are the same experiences I made.I sometimes think , a lot of people identify themselves with their disease. What is left, when they are alive and kicking ??

sphinx

___________________________________________________________
sphinx / On Wheldon CAPi [12] ,14 th May 2008, currently/ Minoi [20] 200 ,ACC 1200  plus supplementsi [21] ,RRMSi [22] since 92, SPMSi [23] 06,  EDSS 7  ,Azi 3 times a week, 4  Tinii [24] pulses

Paul UK, You stated my thoughts so well, I have been reading this thread as it has evolved and agreeing with so much said. 

In reading your statement " I think it can be difficult for people in our position who are very proactive and want to make our own lives better - i go through stages of wanting to save everyone else too - I accepted quite a while ago now that there are not as many thirsty horses out there as i once thought - i assumed everyone would take action to make their health better - but in reality very few do - we should provide as much water as we can in as many places as we can - ultimately though its upto the horse if they want to take a drink."

This is the power of CPnHelp.org, and it is reflected in the statistic that Jim posted this week regarding activity here.   Those that actually become regular posters are small in comparison to those who are using the information for their betterment without our ever really knowing how eponentially it is growing and being passed on.

I have touched very, very lightly on that I am using a protocol to improve my health, very vaguely.  Mostly this is prompted by people's curiosity as to why I am not productive in the workforce and have seemingly "free time", some ask if I am "retired" and I say no.   Then I say it would take me some time to fully explain and that if they would like and need the information,  I would be willing to talk with them at length at some other time that is convenient for both of us.   The invitation is extended, if their interest is casual or nosey, or real, it is left with them to be motivated to follow up with me.  

Todate, no one has taken me up on my offer, although many have "people" that have CFSi [18] and FMSi [25] etc that are having a hard time of it.    Oh, and they often remark on how "good I look" as a measure of my state of being.  

Thanks for sharing Paul.

Louise

 

___________________________________________________________

Louise  CFSi [18],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [26] +fattyEndotoxins HS PRN, Wheldon CAPi [12] 6/07,all supps, Doxyi [6] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

I have come to realise that people are frightened to step out of the well trodden path, especially if the doctors who treat them are not supportive of an alternative way of looking at chronic illness.   Consider the situation should this protocol be standard treatment for asthmai [2], I doubt any one would question their doctor and everyone with suspected asthma would be clamouring for treatment.

___________________________________________________________

Michèle (UK) GFAi [4]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [14] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Ken has a Theory!

 

Sounds dangerous that I might be thinking.  This is an opinion.  My own belief.

I feel that folks don't value things unless they are invested in them.  Think about it.  The investment doesn't have to be money, it can be time (like me reading and reading the CPni [1] handbook) or pride (what's that mean Ken?  It's the process of recognizing that someone else is more of an expert in something than you - if you don't understand this watch an episode of Kitchen Nightmares)

I'll say it again now, folks don't value things unless they are invested in them.

You like your photos of your kids, but do you feel the same about your coworkers photos of their kids that they just about would die if you didn't see them?  You're not invested in your coworkers kids.  But, you go to dinner at a friends and they make a fantastic chicken dish.  You want the recipe.  Why?  Get it?  You are motivated to become invested in the benefits you will receive from learning to cook that chicken dish.  We don't need to know what you're thinking you're going to do with the recipe, we just need to know that you accrue emotional benefit of some sort and that having the recipe will bring you value in the future.  (Kim and I watched Gordon Ramsey tonight, can you tell?)

I've had the experience too.  Folks don't seem to care more than being kind to you in a conversation.  I'm dying to find a way to share this with the world and I just can't break the idea into the right approach.  how abot we all work together on a book that folks would have to BUY, if they wanted to know about this?

Folks would value this more if they had to pay you for the information.  Or if you had a nobel prize, or if they felt the urge to follow through on reading the CPn handbook.

Just a theory, Ken

 

___________________________________________________________
In pursuit of ABX [27]

Sunni,

I used to own horses.  As most of you know by now, I live in Phoenix, AZ.  The desert.  It gets HOT.  I put shade up for the horses but they would STAND IN THE SUN all day long.  They did drink though.  They actually drink alot.  Maybe that's why horses don't drink when you WANT them to though.  That part seems to "hold water." 

My point you say? 

Apparently these horses didn't think like I did.  I mean, why would I stand out in the sun or the rain (yep, they stand in the rain too!) when someone gave me SHELTER.  Of course I would not, but I'm not a horse.  

And so my point... 

The folks on this site and looking for alternatives to conventional treatment are a rare breed.  Maybe we're the zebras and not the horses.  

"When you hear hoofbeats, think horses, not zebras" [28]

FWIWi [29], I have many horses in my family too.  You have to make the water available and they will drink if/when thirsty. 

___________________________________________________________

NACi [11] 2.4g, Zithi [30] 250mg/MWF, minoi [20] 200mg, Tinii [24] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [31]/FMSi [25], Hashimoto's, Psoriasis, PA, IBSi [32], Sec Addisons

Don't believe everything you think!  

I have experienced many many horses in my life & not one of them could be made to drink.  THat is of course, unless I fed them electrolytes, which made them thirsty & then they drank.  This was done when I was travelling to ALOT of shows.  Horses drink alot of water & so hauling it from home just isn't an option for extended trips.

I too, did not know how sick I was & perhaps, still, do not know how sick I am.

I have also told MANY people about our site.  There is proof in Jim's numbers of hits on our lovely site.  What they choose to do with the information is up to the individual. 

Myself...I read & ran with it & have not looked back.  Now if I can just get my husband to take NACi [11].  Hopefully soon.  I have been praying for God to soften his heart.

peace

r

 

___________________________________________________________

CFIDSi [31]/ME 32 yrs, FMSi [25], IBSi [32], EBVi [33], CMV, Cpni [1], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [21] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [5]/day-3 days

Good point Sunnivara.

I think most people find it very difficult to follow their own directions/instincts. We have been trained to blindly follow the 'experts' and many people will only follow the advice of their expert (doctor). It is also so much easier; researching your own cure (especially when there isn't a cure) takes courage and determination and I think the majority would prefer to take the easier option of falling into the hands of their experts.

 

___________________________________________________________

Malcolm

Wheldon Protocol since July 07. Doxyi [6] 200mg since 13 Sep 07 (100mg since 26 July 07), Naci [11] 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi [9] Aug 06.

Ken, I like you thinking is some regards.  I like the facts here for free.  Yet a book of stories about those who succeed to some measure of benefit from these CAPi [12] treatments will eventually be of great use.  

Hope you are starting Kim's story along with all your research and learning.  Did you see my post to you on another thread of yours about the self publishing company.  Was not that long ago take a look

___________________________________________________________

Louise  CFSi [18],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [26] +fattyEndotoxins HS PRN, Wheldon CAPi [12] 6/07,all supps, Doxyi [6] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Louise,

I don't mean to say that we should be paying for the ability to have CPnhelp, TIMS or any other information sharing site.  I'm just pointing out that you're more likely to read a book when you hear about it on the radio or see it on the shelf at Borders than if your friend comes over and gives you a copy and tells you it's the greatest book they have ever read and that you need to read it.

Elective information needs to be pulled not pushed.

Kim documents her story here in her blog and I document it at TIMS at http://www.thisisms.com/ftopict-4375.html [27]

Ken

___________________________________________________________
In pursuit of ABX [27]

Thanks Ken and yes I get your point.  And along with booksellers you can advertise it on the internet and market it on the internet too!  Thanks for the link to the current version of your (both of you really) story.  I just have a feeling that you will keep on thinking and writing so hey the future is out there !

___________________________________________________________

Louise  CFSi [18],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [26] +fattyEndotoxins HS PRN, Wheldon CAPi [12] 6/07,all supps, Doxyi [6] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

With regards to trying to get people to take a look at the treatment options on their own. I have my own theories.

People are innately lazy. They take a look and say, oh my, that will take too much energy from me to try to understand and just brush it off. It's an undustrious and stubborn individual (and one that is desperate to get well) that takes a look and says, wow, that's a lot of information, that will take a bunch of energy to understand, guess I better get right on it!

My other theory is that most of us are brainwashed to believe that the doctors know what is best for us and that we do not have the right or the brains to take control of our own health and wellbeing. I think more and more these days people are getting sick and tired of going to the doctor and getting sent home with a bogus prescription for a symptom or simply a follow up appointment at a later date to see if symptoms have changed at all. People have been lulled into a false sense of security, to use a cliche, by the system that "has advanced and evolved" and knows so much about the human body. Yes, they know more than ever but that has hurt them somewhat as well as now doctors have no use for intuition and creativity. ARGH!

So what do we do, you ask?! I say, we strive on with the protocol. Evidence is the only language people respect and understand. I have full intention of following through with the CAPi [12] until I feel I have benefitted fully; then I will be able to prove my case to others. They all have known how disabled I have been and my doctor is fully aware of each and every nuance of numbness, illness and loss of function. I will share my recovery with them all and they will have to pay attention!

___________________________________________________________

SPMSi [23]< Supplementsi [21] & NACi [11], Doxyi [6] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [5] 1500 mg x 4 days once per month

lol...Reenie, I know what you mean about horses. I used to have some. I was always baffled by their unwillingness to get in out of the rain too. But I finally figured they were just too dumb to make the connection between shade=cool or shelter=dry. I remember reading that a horse's brain is only the size of a human fist. A 1,000lb body operated by a brain the size of my fist...as much as I love horses it is no surprise they are too dumb to come in out of the rain. lol

But, I thought humans were smarter. And you can explain things to them, unlike the horse. You can say, look, this is working for me, if you try it you will feel better too. Why wouldn't that at least stir some interest? It just continues to baffle me that some people seem to have no interest whatsoever in improving their health problems. I guess it's just too much effort, like knowing they'll be healthier if you exercise but choosing to watch TV instead.

 

___________________________________________________________
GFAi [4] - asthmai [2], sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli [5] pulse started June 30, '08. Added Doxyi [6] 200mg/day Aug 16.

But horses don't have to take that bothersome shower every day. And they don't have to go "get their hair done", and they don't get cold and don't seem to mind sweating, and most of us probably have our evercise machines in front of the TV or have something interesting to occupy our (oversized?) brains while we madly cycle, climb, row, run, lift, or do Pilates. They probably have high Vit D levels.

___________________________________________________________

 

Rica PPMSi [13] EDSSi [14] 6.7 at beginning - now 2. Began CAPi [12] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [6] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [5] total 55 pulses LDNi [15] Rifampin 8/08 again NC USA

I think the way to make the information valuable is not to charge for it, but to make it valuable.

The value lies in the success stories.  Get the word out that this is a successful regimen and people will seek it out and find it.  Notice how people take diet pills and vitamin supplementsi [21] based on hearsay, just because they read it on the homepage of their internet server or heard their sister-in-law has a friend who 'it worked for' (whatever the 'it' is).

Perceived value is in the results.  Obviously, if I'd seen Copaxone was a successful drug, I'd have agreed to take it when the neuroi [34] pushed it on me.  When I read and researched Sarah's story and learned of her success, I was ready to research and learn and seek out the treatment.  Let's remember how we found this information.  First Sriram, Stratton, et al, then David and Sarah, all put the info out there for free and did their best to disseminate it.  We should all be doing the same. Interest in what we are doing is already growing exponentially.  With so many successes at the five year mark, I think we are making our own waves and the storm is growing.

___________________________________________________________

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

Sunni, I am quite enjoying your forum thread and the range of answers.  Thanks for starting this fun discussion.   Louise

___________________________________________________________

Louise  CFSi [18],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [26] +fattyEndotoxins HS PRN, Wheldon CAPi [12] 6/07,all supps, Doxyi [6] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM