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CAPi for Cpni 1/08. symptoms of CFSi and Fibromyalsia, Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 2400mg NACi, Soon to start Metronidazolei pulses.

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CAPi for Cpni 1/08. Symptoms of CFSi and Fibromyalsia, Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 2400mg NACi, Supplementsi, Soon to start Metronidazolei pulses.

Only one pulse and then come off the antibioticsi? And you are getting improvements of the "untreatable illness?" This doesn't make sense either both in terms of the CAPi nor your positive response to treatment. Why is he having you do a pulse at all? I think you need to get him to explain his rationale for this change, why he would stop a treatment that is apparently helping you, what medical indicators are you showing that would make him rethink your treatment, etc.. Is he getting cold feet because of how it would look to colleagues? What? 

CAP for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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

It's odd indeed that he should say one thing then do another. Did you supply him with information from this site in the first place? It's understood here that we are in for the long haul of at least one or more years. I would ask him directly what his reasons are for departing from the accepted treatment model.

Of course he could just be a bit forgetful and not have looked at your notes - it has been known... 

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

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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #14...I can because I think I can.

He didn't explain why he wants me to start going off of it.  And it's weird because I didn't know anything about cpni until he tested me for it and he's the one that directed me to this site.

CAPi for Cpn 1/08. Symptoms of CFSi and Fibromyalsia, Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 2400mg NACi, Supplementsi, Soon to start Metronidazolei pulses.

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CAPi for Cpni 1/08. Symptoms of CFSi and Fibromyalsia, Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 2400mg NACi, Supplementsi, Soon to start Metronidazolei pulses.

well, that is kind of wierd Rachel,  It is pretty cool to have a doc refer you to here though.

you are making progress & this doc is saying you should now stop!  I have to agree with JimK, why both doing a pulse at all then.

I too had an improvement in pain & headache after a few months on the abxi while still having to master the die off symptoms after starting to pulse.

My doctor says "what doctor wouldn't want their patient to get well"  I think it is a good point.

You are entitled to a reason for this decision he has made for you.  Does he have an alternative treatment he hasn't shared with you?  I know when you are ill it is hard to stand up when you are right there in front of him & things come to you after you are already home.  My husband came with me to all the appointments I had for the LTDI insurer as he was sure I wasn't able to handle all the "details" due to my severe fog.  I have also had improvement there, though I know I have more CPni to clean up.

Maybe we can find another doc for you if this one doesn't work out.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 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/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#14 1000 mg X 5 days 9-19-08

Rachel, Your question is 'what to do'. What you need to do is prepare for any and all eventualities. What I would do is line up another doctor, order meds from the internet or stockpile whatever I could from the prescriptions I already have, and then listen to what the doctor has to say before making any rash decisions. Take along the simplest copy of the protocol you can, like Dr. Wheldon's schedule of treatment page, and remind your doctor of what it says. Perhaps it IS just a misinterpretation. Get ready to move on, though, because if he pulls you off prematurely, you'll likely be right back where you started and have to do it all again. That's just not fair.

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

Rachel, MacKintosh is being bold in her statement to you and I have to say that I agree with her.  I am on my third doctor and satisfied currently.  I continued alone for several months interview a doctor who wanted me to switch to an herbal protocol so he manipulated by ordering a lab that he know would be skyhigh, my third doctor said that test was to general to be of value, but it was almost another 3 months before I was able to locate and book with #3 with whom I am well pleased currently.    Self treat is not recommended but it is done in a pinch.  A number of us here have been pinched.

Louise

CFSi/ME.

CPnPositive.BbPositive.

WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#5 day 4 in process. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences. treatment.

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Louise  CFSi, CPN+/Bb+, Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphoria & Endotoxinsi PRN, Doxy100daily, Roxi300BID, Tinii 500mgBID pulses, VitD3-4000IU, Magnascent Iodine,{S.O.D.3/QD[KAL Brand], +Pyruvate 3.75G +SAM-e For Energy support

Well I guess if push comes to shove, I do have the prescription refills for the abxi until January'09.  I guess I'll have to find out his reasonings next time I go in and if he wont continue treating me with it then I'll go on my own.

CAPi for Cpni 1/08. Symptoms of CFSi and Fibromyalsia, Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 2400mg NACi, Supplementsi, Soon to start Metronidazolei pulses.

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CAPi for Cpni 1/08. Symptoms of CFSi and Fibromyalsia, Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 2400mg NACi, Supplementsi, Soon to start Metronidazolei pulses.

And, Rachel, you might want to NOT mention that to him, if that's how things end up.

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