23 Apr 2008 05:03 am
27 Apr 2018
Title
What new members want!?
Body
Have you just joined, are you confused by Cpn, the treatment protocols, the reactions you might have and asking yourself and us lots of questions?We all have and we all have struggled with understanding the difficult science and treatment. Additionally we all have to be able to talk to our doctors in terms that demonstrate our understanding of it all.So to make it easier to get started we are writing a quick start information pack that should help most people get to grips with both the disease and the treatment.
Comments
23 Apr 2008 06:13 am
Michele, this is a most
Michele, this is a most excellent idea.
Many times I want to direct a question somewhere where a more complete answer is located and searching this site is not my strong point. This will give us another way to reference material here for the good of all. I will be thinking of basic questions that I struggled with and may add a few questions for this new section of the website.
Louise
CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#5 day 4 in process. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
- CAP(TiniOnly): 06/07-02/09 for CFS
- MethylationProtocolSupplements: Started08/08
- Intermtnt CAP: 02/09-02/10
- Full MethylProtocol & LDN 02/09
- Off CAP: 02/10, cont LDN & MethlyProtocol support
23 Apr 2008 01:20 pm
A few more for the list.
A few more for the list. Brain isn't working too well this morning but I'll keep at it.
Chlamydia!!! Should I get a divorce?
Why is my urine bright yellow/dark brown/pink/purple/green.....
Do I have to take NAC
Do I have to take all the supplements
I started on Doxy/Azith and don't notice any reactions
Do I have to take all the abx
NAC flu what are the symptoms
I'm feeling nauseous what can I do
I have constipation/diahorrea
I always get thrush when taking abx can I prevent it
How soon can I expect to be cured
Can I take painkillers while on this
Am I allowed to drink alcohol
Can I go out in the sun
How do I get diagnosed
My left leg just fell off, is this normal?
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NAC 600mg Feb 9th. Increased to 2400mg Feb 19th plus all supplements.
No GP/Neuro support. Self medicating with assistance from David Wheldon.
Started Doxy 100mg 20th April 200
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.No GP/Neuro support. Self medicating with help from David Wheldon. Started CAP 20th April
23 Apr 2008 06:45 am
1. I have started taking
1. I have started taking high dose of Vitamin B complex. I saw also on the supplement list as well as on Stratton's recommendation (B12). So guess it is good, isnt it? What exactly works for though?
2. I started ordering supplements(NAC, Probiotics...etc.) via internet (instead of buying them in local stores) It is about half price this way. Nothing wrong if it comes from the US to EU? (i mean shipping, heat on the road, cold in the flight...etc). Or it doesnt really matter?
doxy200, azith250, NAC 2400, Metro 1250(once a month), supplements, vitamins.
23 Apr 2008 11:02 am
Timing of abxii and
Timing of abx and supplements.
Which supplements are OK to take at the same time as doxy/azith/metro (flagyll) and which are not?
What period of time should elapse between those that interact negatively?
New Forest, UK. Progressive MSi dx 12/06 LDN 3/07 CAP 6/07: Wheldon version.
speedbird
Great minds and all that.
Great minds and all that. The past few weeks, I've been feeling we cannot go on like this, with each new member asking the same questions. (It's not their fault, so of course we answer each and every one, regardless.) The site has become unwieldy and, though I continue to try to read each and every post, it's getting nigh on impossible, due to the influx of new members who can't find the answers to simple questions, thus they each post the same basic questions.
This will be a godsend. Links to DW's pages are essential. "Why do I have to feel bad to feel good again" is a must. Oh, and 'when will my treatment end'. I'd be happy to write the 'you WILL revisit old symptoms as you progress, so don't think the protocol is failing you" section.
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
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
Samples of different members
Samples of different members supplement and abx schedules in general. Bot the once a day approach for abx and the devided dosing regimen. Different ideas about coping with abx related (doxy) nausea and those with occasional outright stomach pain.
Listing of absolute most essential supplements for those who are financially challenged and paying their own way with all the treatment both supplements and abx.
Full list of porphoria type symptoms so that brain foggled folks can see themselves in the symptoms. I know it is here yet in foggled times not so easy to locate.
I'll keep adding more as I think of them.
This is wonderful.
Louise
CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#5 day 4 in process. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
- CAP(TiniOnly): 06/07-02/09 for CFS
- MethylationProtocolSupplements: Started08/08
- Intermtnt CAP: 02/09-02/10
- Full MethylProtocol & LDN 02/09
- Off CAP: 02/10, cont LDN & MethlyProtocol support
23 Apr 2008 03:54 pm
1. What tests can determine
1. What tests can determine if I have Cpn and can distinguish a latent from an active infection?
2. What are the different types of symptoms (e.g., porphyria, endotoxin, cytokine) associated with this disease and what can I take that will provide some relief from each type? Is there a way to tell them apart?
CFS since 1/07. Pall anti-oxidant protocol since 8/07 with IM hydroxo-B12. Dx 3/08: Cpn, EBV, CMV. Valtrex since 3/08. CAP since 4/08: Zith MWF, Flagyl pulse 3 weeks.
CFS since 1/07. Pall anti-oxidant protocol since 8/07 with IM hydroxo-B12. Dx 3/08: Cpn, EBV, CMV. Valtrex since 3/08. CAP since 4/08: Biaxin 500 mg BID, NAC 1200 mg BID, Flagyl 500 mg BID pulse every 3 weeks.
23 Apr 2008 04:27 pm
This business of porphyria,
This business of porphyria, I thought that was a separate disease, why do I have to for it while treating for my condition?
What is the difference between side effects of the drugs and die off symptoms and how can one know if they are allergic or just getting die off effects?
Supplements & NAC, starting CAP soon.
Lived with MS since 1991. Completed 16 months of full CAP plus supplements. Currently in full remission. Not on any antiobiotics anymore but taking all supplements incl NAC.
23 Apr 2008 04:58 pm
Michelle, this is going to
Michelle, this is going to be the cat's meow!
Great idea, at times I too, have been feeling a bit overwhelmed with the wonderful inquiring minds that are coming on stream.
I have steered a few to the search option but we certainly don't want to deter people from a chance at getting well.
Well done!
CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8
CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<
23 Apr 2008 05:21 pm
Michele, Is there a way to
Michele,
Is there a way to create an FAQ tab on the top of the site for all of these questions to be answered? That would be the easiest way to do this, IMO.
PS ... and so far, I still have both of my legs attached but I think my nose is falling off.
MP for 3 1/2 yrs. NAC 1200 mg/2x day, Iodoral 12.5 mg, myco+ I (still) want my life back! CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Secondary Addison's
When I change what I believe I change what I do
NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!
23 Apr 2008 08:27 pm
Thank you old timers on
Thank you old timers on CPnhelp.org for hanging in there with us newbies and being so very, very patient and kind in answering all our repetitive questions. What you are proposing makes a lot of sense, I'm sure there is much commonality and redundency among questions from folks recently diagnosed and just getting started on a CAP. Hope you know just how much good you are doing as our mentors! Every question answered is encouragement and possibility for improved health, plus your obvious kindness and welcoming approach are mana from heaven, as many of us have struggled long and hard all ready in an adversarial medical system. No real way to say thanks, except to let you know that your extending a helping hand to those folks coming after you is worth it's weight in gold.
With much gratitude,
Andrea
DX: Borrelia, Babesia, CP, suspected Bartonella CAP: Omnicef, Minocycline, Tindamax
DX: Borrelia, Babesia, CP, suspected Bartonella CAP: Omnicef, Minocycline, Tindamax
Andrea, We've all been
Andrea, We've all been exactly where you are right now and we know how it feels to be dismissed, so rest assured we will ALWAYS be happy to answer more questions!
Thank you for the kind words..
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
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
24 Apr 2008 02:50 am
OK peeps, thanks for your
OK peeps, thanks for your contributions... Still a few days left before I have finished with this so if you think of something else, add it to the list.
What we are doing at the moment will not mean that we won't be there to support, it will just make it a lot simpler to get the answers people need.
As Mac says we have all been there and felt the need for comfort and support at one time or another, so that is what we want to do for others too.
Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.
Absolute (and simple)
Absolute (and simple) clarity on practically dealing with porphyrins.
1. what it is and why it is important to deal with.
2. the symptoms of porphoria - i.e. so you know you got it!
3. practical steps e.g. vitamin C flush, water, charcoal, other medical possibilities. Described clearly with instructions to avoid confusion.
Good idea to do this. The CPN Handbook is great, a joy to read, and still fascinating but it is also contains philosophical meanderings, general discussions and theories with the clearer practical stuff all jumbled in: so you can blink and miss something.
(Even after 6 months I was doing the wrong thing - mixing up what Emergen C is for with what Bufferred Vitamin C is for.)
Ciao ....
M.E./CFS 20 years, intermittent. Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07. First Flagyl pulse January 2008.
M.E./CFS 20 years, intermittent. Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07. First Flagyl pulse January 2008. Changed to Tini in December 2008. Stopped CAP in February 2009 at pulse 16.
24 Apr 2008 10:38 pm
Susan- You are so right
Susan- You are so right about the Handbook. Badly needs a rewrite but no time! Michele's CAP-At-A-Glance should really help give a clear outline that will help folks follow the the meandering better!
CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 250mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
25 Apr 2008 06:08 pm
Collect your gems! A lot
Collect your gems! A lot of you have tracked or collected "gems" i.e. short explanations of something you or someone else asked about that isn't easily available in the Handbook or elsewhere. I'd like to start a thread to post these quotes so we can have a running list to contribute to the FAQ's. I just answered a question about low-blood sugar and Cpn, for example, and realized this is one of those questions I've answered a bunch of times, but really isn't in the Handbook in a clear and succint way. So I'm going to use that one as an example of a "gem" and cut/paste just the essence of it.
So, look for the thread and post your gems!
CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 250mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
23 Apr 2008
Do we take Doxyi on an empty
Do we take Doxy on an empty stomach?
When we add Azith to Doxy do we take them at the same time?
Just mention that people will get different reactions to the CAP.
I can state that only after the first week, the fog is lifting a little,
and headaches are the only nuisance so far.
Hope it's some help...
Sarcoidosis 10yrs. before dx.SPMS-2003 that's it. Research - Don't Believe Them. CAP 16/04/2008-05/10/09 - Now Daily: 10kIU D3, Vit.C 1g, Calcium, Ginkgo Biloba, Pro-biotic yog, L-Arginine 1gx6, Magnesium Glycinate 220mgx6.