UK Carer of bedridden Severe ME/CFS Feb06. CPNi [2] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [4] Jan 08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi [2] dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi [4] Jan08.  300mg Roxy Apr08 Stopped abxi [5] Nov/Dec08. Building up on Supps again.

 Thanks Mark. He's a favorite of mine. Sad to loose that mind without a fight!

CAPi [9] for Cpni [2] 11/04. Dx: 25yrs CFSi [10] & FMSi [11]. Protocol: 200mg Doxyi [4], 500mg MWF Azith, Tinii [12] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [9] for Cpni [2] 11/04. Dx: 25yrs CFSi [10] & FMSi [11]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [12] 1000mg/day pulses; Vit D2000 units, T4 & T3

Good for you Mark, when he was on the radio last week I contemplated calling the show but thought that my message would be filtered out as a "snake oil" pitch by the BBC. Then thought that TP would be getting a lot of mail from fans at the moment with the same kind of filtering going on.

Yours is a more thoughtful approach. 

New Forest, UK. Progressive MSi dx 12/06 LDNi [13] 3/07 CAPi [9] 6/07: Wheldon version.

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Progressive MSi [14] dx2006. LDNi [13] & CAPi [9]: Wheldon version. All supps. Doxyi [4] 200mg. Zithi [15] 250mg. Metroi [16] 400mg.Pulses #17...I can because I think I can.

I read about it when it was announced, but I seem to recall a quote from him that he would only pursue recognized therapies and didn't want to be experimenting all over the place. That's actually why I didn't pursue sending a package (Handbook and David Wheldoni [17]'s pdf) to him, which I've done with a couple of other celebrities who have MSi [14] or have loved ones with MS. I hope you're successful. ANY mind is a terrible one to lose, especially needlessly.

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

Well this is not actually so way off base it is based on Good Science and comes recommended by a qualified Microbiologist MD.   Not snake oil not herbs and easier to eat than a mole.

Louise

CFSi [10]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [4], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [10],CPNi [2]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [18] +fattyEndotoxins HS PRN, Wheldon CAPi [9] 6/07,all supps, Doxyi [4] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Well, we know that, but he doesn't. I would also think, after getting over the shock of the diagnosis, he would reconsider his initial stance.

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

So I am sitting here scratching my head and saying what is that response all about??

Louise

CFSi [10]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [4], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [10],CPNi [2]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [18] +fattyEndotoxins HS PRN, Wheldon CAPi [9] 6/07,all supps, Doxyi [4] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Translation:

"Well, we know that, but he doesn't." >> We know that it is based on good science and is not snake oil, but Pratchett doesn't. <<

"I would also think, after getting over the shock of the diagnosis, he would reconsider his initial stance. ">>  See my earlier post regarding what I read about Pratchett's intial comment that he would not try experimental treatment.<<

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

How about a person who just joined here this morning do he/she know it.  Could you consider that my coment was to add clarity.  Oh by the way I dont know who Pratchett is for that matter.  I take it he is someone special is some way or another.   And it is OK if I don't ever know who he is.  We certainly know that these stealth bacterial infectionsi [20] are the great levelers.

They are around for most anyone to catch.  We are the lucky ones who think we are ill due to something that can be treated.  At least we have the positive aspects of hope on our side and that is damn powerful.

Louise

CFSi [10]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [4], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [10],CPNi [2]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [18] +fattyEndotoxins HS PRN, Wheldon CAPi [9] 6/07,all supps, Doxyi [4] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

 I have to admit, I did not know who he was either...Louise, I did not understand that your comment was for clarity for new members. Glad that you were thinking from that perspective. In the future, you might want to consider adding a comment stating that... this way we (new and old members) dont have to try to consider or assume why you stated something. 

Terry Pratchett is a British author of humorous fantasy books, science fiction, and young adult books (which are none the less devoured by his adult fans). He is most famous for his Discworld series of books which currently contains 26 Novels (with more forthcoming), 4 Maps and a Companion (encyclopedia of the Discworld), not to mention quiz books, stage adaptations, audio-books, pottery figures and much much more...

Mphs, TN. CFSi [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni [2], myco, EBVi [21], CMV. NACi [22] 4000mg, doxyi [4] 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli [16], tinii [12]<

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Mphs, TN. CFSi [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [2], myco, EBVi [21], CMV. Capi [9] began in 6/07. NACi [22] 2400mg, doxyi [4] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [16] pulses

Sharon he sure sounds like a brilliant man.

Louise

CFSi [10]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [4], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [10],CPNi [2]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [18] +fattyEndotoxins HS PRN, Wheldon CAPi [9] 6/07,all supps, Doxyi [4] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Reports of what Pratchett might try vary:

"Personally," he says, "I'd eat the arse out of a dead mole if it offered a fighting chance."

(the quote is from this article [23])

Norman, No, precisely what I'd hoped for has happened; he has assessed the situation and rethought his position on learning how little help is truly available. This article you linked to quotes his earlier comment (Dec 07) that he would only entertain medical assistance from the best of the best. Now, in March of 08, he's more open to other possibilities... I hope his agent does pass the info to him. I also placed a response to the news article you linked to, pointing people to cpnhelp.org. There's a posting delay, so I don't know if they'll accept it or not, but here's hoping they do.

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

Sorry; double-post. Twitchy fingers on day eighteen of flagyli [16]!

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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

For those not in the know about Terry Pratchett, here [24] is what Wikipedia says about him.   In brief he is a 'fantasy'/science fiction author along the lines of Tolkein probably best known for his long series of Discworld books.   Humourous and other worldly.

Michèle (UK) GFAi [25]: Wheldon CAPi [9] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [16] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [27] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [25]: Wheldon CAPi [9] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [16] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [27] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006