Welcome to all the new folks and Yes you may be helped !

Normally I and many others here try to welcome each new person one by one but there are so many new at one time, I thought I would just welcome each of you at once.

Have to say that having posted here for almost a year - this is a very and I mean very good site! A lovely oasis of sanity in an internet loaded with lots of bizarre ideas with very little scientific merit on how to improve your health.

On this site, you will likely find loads of good information, science and experience as well as many kind hearted people who are willing to encourage you in your quest towards health !

As I read through many of the starter blog posts this AM, I notice that many of you are very sick and have been very sick for a long time and as is common here received very little in the way of help from the standard medical system/community.

You may now wonder about your chances- what percentage are helped by treating thoroughly for CPN?

There is no good data on this. No one can accurately say - 10% of this disease are helped, 50% of this disease are helped, etc...

Nobody can promise you that if you try treating CPN with some combination of well thought out antibioticsi [2] and supplementsi [3] that you will improve, get well or regain your complete or partial health but many people here have done just that. This is still very experimental therapy.

To be fair balanced - many people here have improved - many to a very high degree but some also have not improved. Many theories why but no concrete answers as to why there are some treatment failures.

In my opinion, the only way to know for sure if treating for CPn will help You is to try it. Empiric treatment that is - and see what happens for you.

Daisy - Husband on CAPi [4]i [4] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

thanks for posting this

Submitted by ruthless1 on Thu, 2008-04-24 13:39.

thanks for posting this Daisy, from the midst of insanity!

Please take good care of yourself. I was very pleased in your post to Joyce that you are firmly positioned on the road to taking better & time for yourself to regroup. This preventative action is very wise.

Peace

CFIDSi [5]/ME 25yrs, FMSi [6], IBSi [7], EBVi [8], Cpni [1], (insomnia - melatonini [9], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [10] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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CFIDSi [5]/ME 32 yrs, FMSi [6], ~~IBSi [7]~~, EBVi [8], CMV, Cpni [1], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [10] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08

Daisy-where is Clammed? She

Submitted by veressv on Thu, 2008-04-24 13:46.

Daisy-where is Clammed? She was so down recently and we havent heard of her since... I am really worried about her!

Hi Veressv, I have taken a

Submitted by Louise on Thu, 2008-04-24 14:24.

Hi Veressv, I have taken a look see and she is not accepting direct email.

I would suggest that you go to that last post written by her and Write your concern again and ask her to post an open reply to you. That is about all that anyone can do.

This is an internet community and it is inreach only, we come here of our free will and we stay away at times and end sometimes abruptly. I too have had concerns about people over time and they disappear. This is often true particularly for new folks. She may be back this next hour, the next week, next month or next year or unfortunately never.

So here in lies some of the difficulties for investing time and energy and concern. Of course, the joys and following the journey of those that stick with this process outweigh the sadness of seeing folks throw in the towel, perhaps too early in our opinions. You can also leave a Personal Message so that when and if she does join us again she mayl respond.

There is something unique about those that take this CAPi [4] jouney on and who stick it out. A certain independence and self-decernment perhaps, maybe taking one's own destiny into our own hands in a way.

Many of us have been sick for a long time and know that there are precious few options.

I am approaching a year soon and will tell you CAP IS WORKING FOR ME, yes, that was a shout. It was very difficult for the first 4 months for me and that is putting it nicely.

I do hope she returns, I have wondered about how that will play out too.

Glad that you have joined us. Keep posting there are more friends here!

Louise

CFSi [11]/ME.

CPnPositive.BbPositive.

WheldonCAPbegan6/24/07. NowNAC,Doxyi [12], Roxi, TiniPulse#5 day day 5 one more pill to go, headache is coming on, will start Cholestyramine tonight through day 15 ( that will be 10 days). Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences treatment.

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Louise-CFSi [11], CPN+/Bb+ Wheldon CAPi [4] 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi [13], Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3TID[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

veressv, clammed_up hasn't

Submitted by cypriane on Fri, 2008-04-25 16:16.

veressv, clammed_up hasn't fallen off the edge. She has entered comments 3 times today. You can click on her name anywhere on the site where it's highlighted. That will take you to a page where you can press the "track" tab located at the top. That feature tracks the locations of comments and posts in most recent to oldest order.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [14]). CAPi [4] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [8], CMV & other herpes family viral infectionsi [15], elevated heavy metals, gluten+casein sensitivity.

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I would like to thank the

Submitted by horses12 on Mon, 2008-04-28 19:40.

I would like to thank the folks who sent me mail. I am new to this site and am still learning the ends and outs. A quick insite to who horses12 truely is. My symptoms have ranged from CFSi [11] AND FMSi [6] or as we all realize now thats when the doctors put us asside and try and medicate us with antidepressents. I was a respiratory therapist and was exposed to every illnesw under the sun,but I have to say cpni [1] was never on my list of "what is wrong with me". It has been three long suffering years being misdiagnosed and mental exhaustion. I now have a wonderful GYN doctor who took the time to rule out lyme and test me for cpn. I just finished Doxyi [12]. and now I am on Levaquine. The shortness of breath and high blood pressurei [16] are making life a bit difficult. WISH ME Luck on this quest for healing. One question to anyone who might have same symptoms of muscle weaknesw and difficulty in walking. GOD BLESS ALL OF US.

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started Wheldon capi [4] 4/21/08. Currently on: all supplementsi [3],Doxyi [12].100, added Azith.250mg S M/W/F on 6/30/08. Will add NACi [10] later as tol. (nac was holding me up on starting protocol).

Wow - was off line for a

Submitted by Daisy on Sun, 2008-05-11 22:03.

Wow - was off line for a few days and wow - tons of new people again! So glad so many people are finding there way to this little outpost of health and healing.

Bumping this up to say WELCOME to all the new folks since I posted this last time.

Glad you are each here! Good luck with your treatment!

^{Daisy - Husband on CAPi [4] 5/07. Roxyi [17], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [12], Azithromycin, Flagyli [18], Minoi [19]}

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Daisy - Husband on CAPi [4] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy, a couple of people

Submitted by MacKintosh on Mon, 2008-05-12 00:24.

Daisy, a couple of people on the LymeNet board were talking cpni [1] and you know how we can be... next thing you know, we have new friends to keep us company at all hours of the day and night. I really have to get back on a normal schedule. Michele and I are often on the site at the same time, me ridiculously 'late' at night and she ridiculously 'early' in her morning. ;-)

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