I was shocked that my GP actually wrote me scripts for minoi, zithi and tinii for a full year's worth.
I was so surprised since I had gone in to discuss with him the suggestions from the derm Dr to use Humira which I refused and the ID Dr's thoughts to go back to all of the ancient and old fashioned ways to palliate symptoms of CFIDSi (anti depressants, etc) since he doesn't feel I have an infection. (exactly what Jim said)
But the ID Dr did order my labs for viral and bacterial titers and a PCRi too for CPn so it wasn't a complete waste and it led me back to my GP which I'd rather have treating me anyway. 
I have some family issues right now so I haven't been online much at all lately but plan to begin taking mino at 100 mg/day for starters. I believe the plan according to David Wheldoni's protocol suggests to take mino (or doxyi) at that dose first and then add the Zith before the full dose of mino so I will follow that strategy unless anyone suggests something else.
I am also planning to build an IR Sauna over the next week or so and will begin using it too. For how many minutes do you suggest using the IR Sauna treatments and how often?
MP for 3 1/2 yrs. NAC 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do
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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I do
Congratulations Reenie, what
Congratulations Reenie, what a turn up for the books... Regarding FIRi sauna here is a thread bout it and some information on how to go about it. I would suggest you keep it short in the beginning (10mins). People have had quite marked reactions to it if staying in (or under) too long.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Hi Reenie- Success! Sounds
Hi Reenie- Success! Sounds like a good way to start.
If you are building one it sounds like you will use the near IR light bulbs? I found them to cause more die off than the FIRi box I have as they are apparently more antibacterial. I'd start with no more than 10 minutes and gauge your reactions. You may not feel you heat up your body much in that time, but it may have more effect subjectively than you expect. Personally I've found the FIR easier, and I can get a sweat going within a tolerable time period (now at 20 minutes, but not yet daily as can't find the time!).
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, 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
Jim, Yes, I'll be using the
Jim,
Yes, I'll be using the bulbs. I'm also using hot epsom salt baths and I can get plenty of "sweat" going living here in Phoenix especially during the summer months.
Reading Dr Wilson's page about sauna and other detoxing methods explains alot to me about how/why sweating along with coffee enemas have helped me feel better in the past.
I think it's time to add and revisit some of those therapies.
BTW, has anyone considered using coffee enemas to help with porphyriai, especially when fat soluble toxins are present? It might be another helpful aid.
In regards to IR Sauna therapy, Dr Wilson states,
Those who have used LSD or other psychotropic drugs require an attendant close by, as removal of drugs from tissue storage sites may cause flashbacks and even full-blown LSD trips
Without admitting past drug use, has anyone experienced any of these sort of experiences or know anyone that has from using the sauna therapy?
There are more comments about this under the "supervision and safety" section in THIS link.
I will definitely respect the use of proceeding with caution as I use the detoxing methods but I think it will be well worth adding to my regime.
MPi for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do
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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I doI am doing my abxii just
I am doing my abxi just like you described Reenie. I started May 1st on 100 mg Doxyi, then after two weeks added the Azith, soon will ramp up to 200 mg Doxy. Things are going so well. I have had some die off effects, but nothing unmanageable. The exciting part is I have already seen some improvement which is a real surprise so soon. I am not looking forward to the Flagyl so will likely wait a couple months to do that. I am busy with gardening and my greenhouse when I have the energy and the strength so don't want to loose that. Winter is so long and cold here that I want to make the most of spring and summer. Good luck!
SPMSi< Supplementsi & NACi, Doxy 100 mg, Azith 250 mg 3X/wk
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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, starting flagyli slowly
Reenie, Kudos to you for
Reenie, Kudos to you for having such a great GP! I wish you success on your journey.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Tody, Thanks for your
Tody,
Thanks for your encouragement and support. This site is notorious for that, along with all of the great scientific data and links. I'm so glad I found this site.
As for your gardening and pulsing, first off, from what I understand, it's not recommended to begin to pulse the flagyli (or tinii which I've elected to do first) until about 3 months time.
It would be my personal suggestion that you would wait at least that long if not until the weather turns for you and you can't enjoy it anymore. I think for me, that would be my own strategy and why I feel the detox methods are so important... to feel better all the while recovering.
I believe you can get some results from detoxing and die off in addition to the antibioticsi and so it compounds the effects of your CAPi by using them while clearing toxins which make us feel worse as well.
Go s-l-o-w-l-y has always been my motto as it's quite difficult to undo a horrendous experience which would make any of us, even a well person cringe.
MP for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do
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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I doJoyce, Thank you! I really
Joyce,
Thank you! I really feel he felt sorry for me seeing me in the state I was in yesterday. On top of that, my GP knew I was planning to do the CAPi and he watched over the years as I've tried to get myself weller and off of meds rather than on them, including pain meds.
He did want to reinforce that he did not have much confidence that the CAP will heal me but he didn't feel it would harm me as much as the possibility of the designer meds which alter the immunei system or steroids, which we all know wreak havoc.
Again, thanks and Godspeed to all of us!
MPi for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do
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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I doHey Reenie,I'd love to see
Hey Reenie,
I'd love to see some pics of your IR Sauna when you have it set-up as I'm thinking of doing similar.
I've been on a couple of sauna lists and the flashback thing you mentioned hasn't come up in the posts I've read. My guess is that its more of a precaution than anything else. Also a lot of people use sauna as part of drug rehab (as in the L Ron Hubbard stuff), so probably more applicable to that.
CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg + Rifamp 300mg . Tinii pulses 1000mg. Sauna QOD. D 8000IU. Niacini 3 x 500mg. Mel 3mg.
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Hunter: Don't think - experiment
Garcia, It's basically just
Garcia,
It's basically just a pvc frame the length of a bed (6') and 5' high with 5 portable flood lamps clipped on to it from Home Depot with the IR bulbs in it.
I'll be happy to post a pic when I make mine.
MP for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I do
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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 25mg, Recommended Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
When I change what I believe I change what I doReenie, Congradulations.
Reenie, Congradulations. I'll be following your progress.
Louise
CFSi. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi,Doxyi, Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini Die-OffExperiences.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.