Today is day 5 of the Wheldon Protocol. I saw David last week, got all the info and the prescription and trotted off to the Pharmacy to get it filled.
I picked a particularly busy time and therefore had a somewhat harrassed Pharmacist who was presented with something well out of the norm. First off, I completely wiped out all their supplies of Doxyi [1] and Azith so half had to go on back order. Then I caused no end of confusion with the pack labelling.
They just didn't have enough room to fit the 100mg per day for 1 week then, if well tolerated increase to 200mg per day then........ so eventually I just told them to put "as directed" on there.
I said it was busy. There were at least 20 people waiting and we were all crammed into a corner of what is admittedly a small shop immediately opposite the local Medical Centre. I was pinned up against a shelf full of hair dye and was considering going Aubergine when the Pharmacist called my name. I shouted back and she was querying which Azith I wanted.
"Is there more than one? What's the difference?" I yelled
"Yes there are two, one is for Chlamydia" she yelled back
"That's the one" I replied
I was suddenly surrounded by acres of space. So I helpfully added "The one for Chlamydia Pneumoniae, the type that's spread by coughs and sneezes". The space around me then got even larger as some of the people developed an all consuming interest in hot water bottles on the far side of the shop. 
Returning home with my small mountain of drugs I decided to wait before starting them to make sure I had all the correct supplementsi [2] in place and a sensible schedule for taking them. I was intending to start the CAPi [3] proper on the following Monday.
On the Saturday, I had my first truly MSy episode and threw myself down the stairs. I wasn't badly injured in the sense that I didn't break anything or whack my head but I had a severely sprained arm and a lump the size of a melon on my leg where I'd hit the newel post on my way down.
Strangely and it's probably down to the MS, I wasn't particularly shaken by this, more intrigued by the fact that I clearly remember stepping off into mid air when my brain thought my left leg was heading for the step but my left leg obviously had other plans.
This did however make me decide to start the Cap a bit sooner so I sorted everything out and downed the first dose of Doxy 100mg on Sunday. I had read previously that you needed to remain upright for half an hour after taking it and that some people suffered nausea and acid so I drank loads of water and ate a slice of toast. I got very slight acid reflux so I had a cup of tea and some biscuits and after that I was fine.
Day two I modified the method a bit. I took all the morning supplementsi [4] with water but also the entire day's dose of all the oils, Omega, Glucosamine and Evening Primrose; based on an assumption that the oils might help line my stomach. I then had a cup of tea to help melt the capsules faster, followed by a couple of plain biscuits (digestive aka Graham Crackers) then the Doxy and just to be safe, another biscuit.
Success. No nausea, no acid reflux.
I'm now on day five and have had no problems from the Doxy at all. What I have noticed though is my sprained arm and leg lump, that previously would have taken at least a week to recover to the point where I didn't go OUCH every time use of them was required, healed in a couple of days. By Tuesday morning I couldn't feel anything untoward when using my arm, the lump on my leg had gone down and the bruise was black and yellow.
I'm not sure if this was down to the Doxy or the fact that I'd been on the NAC and Supplements for 2 months whilst waiting for my GP to make up his mind. Whichever, YAY protocol. Here's hoping it continues in this vein.
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Berkshire, UK. Diagnosed RRMSi [5]i [5] Feb 4th 2008.
NACi [6] 2400mg. All supps. Doxyi [1] 200mg. Zithi [7] 250mg. Metroi [8]i [8] 400mg.
No GP/Neuroi [9]i [9] support. Self medicating with help from David Wheldoni [10]i [10].
Started CAPi [3] 20th April 2008. First pulse June 2008
Links:
[1] http://www.cpnhelp.org/taxonomy/term/39
[2] http://www.cpnhelp.org/taxonomy/term/63
[3] http://www.cpnhelp.org/glossary/term/168
[4] http://www.cpnhelp.org/taxonomy/term/57
[5] http://www.cpnhelp.org/glossary/term/184
[6] http://www.cpnhelp.org/chlamydia_pneumoniae/supp
[7] http://www.cpnhelp.org/taxonomy/term/41
[8] http://www.cpnhelp.org/taxonomy/term/44
[9] http://www.cpnhelp.org/taxonomy/term/7
[10] http://www.cpnhelp.org/taxonomy/term/36
[11] http://www.cpnhelp.org/user/andesine
[12] http://www.cpnhelp.org/glossary/term/163
[13] http://www.cpnhelp.org/glossary/term/167
[14] http://www.cpnhelp.org/glossary/term/175
[15] http://www.cpnhelp.org/glossary/term/183
[16] http://www.cpnhelp.org/glossary/term/120
[17] http://www.cpnhelp.org/taxonomy/term/58
[18] http://www.cpnhelp.org/taxonomy/term/40
[19] http://www.cpnhelp.org/taxonomy/term/42
[20] http://www.cpnhelp.org/taxonomy/term/6
[21] http://www.cpnhelp.org/print/4268#comment-31390
[22] http://www.cpnhelp.org/glossary/term/164
[23] http://www.cpnhelp.org/taxonomy/term/24
[24] http://www.cpnhelp.org/taxonomy/term/19
[25] http://www.cpnhelp.org/taxonomy/term/128
[26] http://www.cpnhelp.org/glossary/term/185
Andesine- Congrats! I am
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doxy200, azith250, NACi [6] 2400, Metroi [8] 1250(once a month), supplementsi [2], vitaminsi [4].
Andesine, I just love your
Andesine, I just love your pharmacy account and why even C.Pneumoniae as a word and the description is taken by the general public. Sigh, I have been and still think that it is best for me in many venues to be elusive if I choose to talk about my history of unrelenting fatigue in general statements. If someone ernestly wants information then I am happy to take the time to explain. And share the site. Strange though the local Lyme crowd was totally not interested. And here I am getting better and better and they are still fretting and guessing and not really understanding the difficulties in the slam bam mono therapy approaches that they are taking. If I had to do this for the rest of my life I believe I could if done right so doom and gloom around the future is out of the picture for me.
Louise
CFSi [12]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [1], Roxi, TiniPulse#5 day 5 in process. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi [12],CPNi [13]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [14] +fattyEndotoxins HS PRN, Wheldon CAPi [3] 6/07,all supps, Doxyi [1] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Andesine, Thank you for
Andesine, Thank you for making me laugh out loud with your pharmacy story. Despite your fall down the stairs, it sounds like you are getting on well in your journey. Keep up the good work. I hope your next trip to the pharmacy is just as fun...and we want to hear about it.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [15]). CAPi [3] since August 06, Cpni [13], Mpn, B. burgdorferi, systemic candidiasis, EBVi [16], CMV & other herpes family viral infectionsi [17], elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [15]). CAPi [3] since August 06, Cpni [13], Mpn, B. burgdorferi, systemic candidiasis, EBVi [16], CMV & other herpes family viral infectionsi [17], elevated heavy metals, gluten+casein sensitivity.
Next time I visit, I shall
Next time I visit, I shall be wearing a balaclava and dark glasses and going by the name of Simon.
Berkshire, UK. Diagnosed RRMSi [5] Feb 4th 2008.
NACi [6] 600mg Feb 9th. Increased to 2400mg Feb 19th plus all supplementsi [2].
No GP/Neuroi [9] support. Self medicating with help from David Wheldoni [10].
Started Doxyi [1] 100mg 20th April 2008
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Berkshire, UK. Diagnosed RRMSi [5] Feb 4th 2008.
NACi [6] 2400mg. All supps. Doxyi [1] 200mg. Zithi [7] 250mg. Metroi [8] 400mg.
No GP/Neuroi [9] support. Self medicating with help from David Wheldoni [10].
Started CAPi [3] 20th April 2008. First pulse June 2008
Andesine - Perhaps next
Andesine - Perhaps next time you go to the pharmacy and it's crowded and there's a line or wait for your meds you could annouce as loudly as possible (from behind your dark glasses of course) that you are there to pick up your prescriptions for Chlamydia.
May get you in and out of the door quicker.
Seriously - you are off to the races - turtle races that is - good luck !
Daisy - Husband on CAPi [3] 5/07. Roxyi [18], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxyi [1], Azithromycin, Flagyli [8], Minoi [19]___________________________________________________________
Daisy - Husband on CAPi [3] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Oh Andesine, thank God for a
Oh Andesine, thank God for a sense of humor amidst the "P" off that is MSi [20]. I too have had a good laugh at your expense. Please feel free to share more loopy anecdotes of life on your CAPi [3]. I am waiting for my GP to finish with the material about the protocol. He told me he will give me any prescriptions that I need but wants to read material. Do I believe him? Not sure yet. I have had my share of being cranked around so will wait to see if it is another case of twisted intentions or if he will really come through. Irregardless, I will attempt to scope out my local pharmacy to ensure I don't land on a busy day so that I don't end up with purple hair.
Supplementsi [2] & NACi [6], starting CAP soon.
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SPMSi [15]< Supplementsi [2] & NACi [6], Doxyi [1] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [8] 1500 mg x 4 days once per month
Yes, that was definitely an
Yes, that was definitely an LOL! Sorry about the tumble, but dang was that humorous!
Tennessee, USA - Bb positive w/neuroi [9] involvement, suspected CPni [13]
Doxyi [1]/Samento for Bb 2005-2007
Started CAPi [3] 4/19/08 - NACi [6] 2400mg, Doxy 200mg, Zithro 250mg M/W/F
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Tennessee, USA - Bb positive w/neuroi [9] involvement, suspected CPni [13]
Doxyi [1]/Samento for Bb 2005-2007
Started CAPi [3] 4/19/08 - NACi [6] 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi [8] pulses @ 3x500mg
Ande! I am glad the toxins [21]
Ande!
I am glad the toxins have left your sense of humour in tact! I was LMAO the the pharmacy visual I had! I have, actually seriously, considered using those medical mask for the plane rides & crowded human bean places. I wonder what the reaction would be at the pharmacy, dark glasses & a mask!
Sorry about the leg confusion & the ash over tea kettle moment on the stairs. I have been there & had the bruises & I don't have MSi [20]!
ONward & UPward MAD CAPper.
CFIDSi [22]/ME 25yrs, FMSi [23], IBSi [24], EBVi [16], Cpni [13], (insomnia - melatonini [25], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [6] 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 [22]/ME 32 yrs, FMSi [23],
IBSi [24], EBVi [16], CMV, Cpni [13], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [2] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [8]/day-3 daysWelcome aboard Andesine to
Welcome aboard Andesine to the mad rollercoaster ride that is the CAPi [3] journey. You've taken the first and most difficult step, now all you need to do is hang on like grim death until the end of the ride. Sorry to hear about the fall, looks like life is preparing you for the 2 steps forward 1 step back process that is this protocol. I well remember the pharmacy experience, I swear they thought I was going into the dispensing business for myself, as I walked out with a shopping bag full of boxes.
Good luck
Robert - MSi [20] for 16yrs. CAP since Jul 07, NACi [6] 2400mg, Doxyi [1] 200mg daily, Azith 250 mg MWF, Flagyli [8] 5th pulse.
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Robert - MSi [20] for 16yrs. CAPi [3] since Jul 07, NACi [6] 2400mg, Doxyi [1] 200mg daily, Azith 250 mg MWF, Flagyli [8] 10th pulse.
Yes, and it sounds like that
Yes, and it sounds like that first step was a doozy! Now you know: when capping, stairs are to be crawled down!
PPMSi [26]-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi [9]. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAP 3/2/07 - 200 doxyi [1]; azith MWF. 4 pulses. Rockville,Md. Loo
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PPMSi [26]-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi [3] 3/2/07 - 200 doxyi [1]; azith MWF. 5 pulses.