Since January 11, 2009, I have been off of all anbiotics except for one series of intermittent, to which I had no reaction. This is all so amazing, extending into the rhelm of the unreal - yet I am here, working hard every day, doing much of what I would like to - the main reason I can't do more being that there are only 24 hours in the day.
Around the end of January I went for my regular checkup and told my doctor about reaching the end of my four year four month regimen. He was very suitably impressed and later said as we discussed this that our site is "IT". I had suggested that all his MSi patients should do this and he made his usual tongue-in-cheek joke (?) about my visiting him in jail when they come and raid his office and take away my file. As both he and my husband say: This is not accepted medical practice. To which I respond: But it works - and not just for me, but for many others who would be dead or a reasonable facsimile thereof. Some may say to that, that he/she is not "up and running" (I don't run, but I sure do walk), to which I say that we don't know for years how much improvement we will get, these are not dangerous drugs, and it's lots better than the alternatives we are offered by the ones supposedly in the know.
Our phone is finally fixed. Our phone line had to be dug up for several hundred feet. The men said it looked like the dogs had dug it up, chewed it, and reburied it. Our brand new hard drive died and had to be replaced. It was under warranty, but is still not right or complete.
This was all at the best time since it has been kidding season, and our day has typically begun at 6 AM and ended for the most part around 10 or 11 PM. I say mostly because 2 AM is a very popular time to kid, which or course makes 6 AM come much sooner than it would otherwise.
A note to all who are at the beginning of this immense endeavor: Five years ago, we sold half our herd of wonderful goats - an undertaking begun now 32 years ago, with an enormous amount of labor expended every day since. We were forced into this by the circumstances of my very rapidly declining health. I wish all of us to be well and get all the recovery that we can. I will never be as capable as I was but I have most of me back. We can do this and spread it to the world. My doctor said so.
Rica
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3/9 Symptoms returning. Began 5 abxii protocol 5/9 Rifampin 600, Amoxicillinii 1000, Doxyii 200, MWF Azith 250, flagylii 1000. Caffeine pills with AM abxii Began Sept 04 PPMSii EDSSii 6.7 Now good days EDSS 1
Rica
Rica
I'm so glad that you've been here to shine the way ahead. I hope that everything goes well this spring!
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best, John
RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007.
Added INHi 300mg/daily 03/17/2008stopped 05/08. AddedRica... It is sad that
Rica... It is sad that doctors have to "fear" providing a protocol that is so simple, could be so beneficial and life-changing (and saving).......
You have been an inspiration and support to me in many of my times of trial here. May blessings and continued health be with you.
JeanneRoz
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JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi;250 AzithM/W/F; Tindamax Pulses, B12 shots,
Armour ThyroidERFA Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Suppl<Thanks for posting of your
Thanks for posting of your recovery. It encourages us all.
Best to you, Timaca
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Dx lyme disease 3/05. Dx HHV-6, EBVi, VZV, and HSV1 6/07. Dx with CPni 5/08 and enterovirus 2/09. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyi bidi for Cpn, acyclovir for viruses, oxymatrine for enterovirus
Well, if your doctor said
An Itinerary in Light and Shadow
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Rica, You have been such
Rica, You have been such and inspiration to me and Ella and I am mighty pleased for your sake and ours that you have reached the end of your treatment. What a great achievement and it is so good to hear that you can once again enjoy you goats.
Love you lots from my distant home.
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
So happy to hear this
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CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.
This is great Rica, well
This is great Rica, well done!!
So happy for you and wish you and your husband all the best and a cpnfree future!!
Best Wishes,Maria
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Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat
Ah Rica, you are a light in
Ah Rica, you are a light in the dark, a flame in the cold, an energy bar on the way up Everest. Thank you. May we all join you soon. 4 years, 4 months, huh? Just about what I had planned on. And you lucky duck, you get to compare accents with Sarah too!
Nancy
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PPMSi-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 3/2/07 - Now (1/10) doing 100 doxyi; 125
Congratulations on your
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #30...I can because I think I can.
Rica, life has come back to
Rica, life has come back to you in a beautiful way. Your persistent progress has been an inspiration to all of us. When I was just starting out on the CAPi and unsure if I would ever get well, your reports were what I needed to hear. If Rica can do it, so can I!
Kiss the baby goaties for us!
Raven
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Feeling 95% well-going for 100. Still testing + for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.for MSi and/or CFSi. Also EBVi and HHV6. Doxyi, Azith, Tinii pulses. NACi, Iodoral, T3, BHRT, MethyB12 injections, Nitro patch, LDNi, FIRsauna, methylation supps
Rica, it's so good to hear
Rica, it's so good to hear that you've achieved so much of a recovery. It's been a long hard road, I know, I've been following your progress and it has been one of my inspirations throughout. Perhaps you will now get the chance to do those things that had to stop for so long. All my best wishes for a brighter future.
Robert
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Robert - MSi for 16yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli 25th pulse.
Rica,your health road has
Rica,
your health road has been a bumpy one to say the least! You have gracefully clawed your way back from all the valley's you have been given. This takes moxy & spirit. I thank God for the wonderful person you are & the huge recovery you have made!
It's a beautiful life, stop to smell the flowers!
peace
r
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CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Sea Kelp,Iodorol, Inositol, Chitosan, L lysine Pulse#25 01-27-10 1gm Flagyli/day-5 days
Rica, Cheers! Well done -
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Rica thanks for your update
Rica thanks for your update and congradulations on completing your course of treatment. Does your one round of intermittent CAPi without any symptoms convince you that you can drop that phase and begin your life completly antibiotic free at this point? I just want to be clear when I congradulate you on full completion!
I have moved into intermittent phase and still am doing very well with my energy with no current reoccurance of any symptoms. My extended pulses without any sypmtoms and my need to take a regenerative break for liver health have convinced me to begin a course of intermittent. I know that for me complete cessation is not a good option. Time will tell for me, I can always resart daily dosing if I find the need based on sypmptoms.
I am so very happy for you success and hope you will continue to support those here that follow in your footsteps.
Best Regards for you journey well done,
Louise
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6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
Thanks for your precious
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< SPMSi - EDSSi 7 > < NACi 600mg X 2, Doxyi 100 mg X 2, Azith 250 mg MWF, Flagyli pulses, green tea, curcumin, flavonoids + all the supplementsi listed on Wheldon's Protocol (and possibly more) >
Dear Fellow Travellers,What
Dear Fellow Travellers,
What a wonder it is to realize that many brave peers have been touched (or whacked!) by the events in my life. Every day I am in awe of this site and the people on it who come to drink of the pooled courage and wisdom and humor that we offer to each other.
As I said to Richard (my husband who has seen me through so much with amazing good humor): Every thing I do every day is a test. We have been doing repairs in the barn and maintenance that has been overlooked for several years - well, more than that. But at that moment, I was repairing a manger that I built 30 years ago. I built 18 more after we moved here, made from cutting up the lumber from the roof that had fallen in. This particular manger has withstood lots of hard use, and I wondered why the floor had stayed in while several of the other, newer ones had sagged. I discovered that the main reason is that people have stood in them too often - when I see someone do that, I ask them I they would mind if the goats stood on THEIR food. Anyway, the point is that my hammering has improved - still not where it was, but much, much better, as is my digging, my cobweb removing over my head with a broom (couldn't do that one at all for years, but now I can), and lots of cleaning that I couldn't do for a long, long time.
An interesting thing has been happening. Along with my increased expenditure of energy, labor, muscle power, my weight has been slowly dropping to my usual of decades. I had reached as much as 120 or so and am now around 109, one my way to 105 - 108 where I was from age 14 on. Of course, part of it is that we are busy, busy and just don't have much time, but I think that is not all, and I don't mind.
Soon I will begin my second intermittent 15 day course of abxi, probably with Biaxin, Doxyi, and flagyli. The occasional right leg numbness after I stopped abxi was transient and has not returned.
Rica___________________________________________________________
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Ooh! ANOTHER skinny lady!
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PPMSi-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 3/2/07 - Now (1/10) doing 100 doxyi; 125
Arttile, be quiet: it'll
An Itinerary in Light and Shadow
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Rica, So great to hear your
Rica,
So great to hear your update. I'm struggling lately (will blog later this week) and just got labs back, still wondering what to do (next) for how long and is it worth it. Apparently, it is.
As for the weight thingy, I agree it's two fold... when we are sick, we produce too much cortisol (the little fat/stress hormone) which causes folks to have insulin issues (hypoglycemia, diabetes) and the best way to burn it up is to move. Well, you can't move when you have no energy due to the bugs stealing it so this all changes as we heal.
I experienced a fitter me sandwhiched in between the start of CAPi and that other protocol and can't wait to return to that place again. Feeling good and looking good... what an incentive. Thanks for sharing!
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
skinnny.....weeeeee, I look
skinnny.....
weeeeee, I look forward to that!
peace
r
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CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Sea Kelp,Iodorol, Inositol, Chitosan, L lysine Pulse#25 01-27-10 1gm Flagyli/day-5 days
Arttile, You are not fat.
Arttile, You are not fat. You are fairly close to being tiny. Honest, everyone. (I think, when someone tiny gains a few pounds, they probably feel like they're heavy.)
I think maybe she's been looking in the fun-house mirror again!
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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
Yeah, but by the time this
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PPMSi-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 3/2/07 - Now (1/10) doing 100 doxyi; 125
Never said I was FAT --
Never said I was FAT -- just said I had gained weight and couldn't lose weight no matter what. No food, no energy. And of course, 5 pounds is the difference between sizes. Good thing I can do ebay! New wardrobe! Anyway, MacK, how do you know? You haven't seen me since June.
And don't confuse width with stature. Hmmph! -- you big people! I thank God every day for the Asian girls in my classes.
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PPMSi-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 3/2/07 - Now (1/10) doing 100 doxyi; 125
Ah, Nancy, we never take
Ah, Nancy, we never take anything too seriously nowadays (except our health, I suppose), do we?
(If nothing else, illness ensures you get your priorities straight, in a hurry.)
Rica, does this mean you've got a permanent computer link again? How many kids, so far, this season?
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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
I am dreaming about "Rica
I am dreaming about "Rica and I have got rid of ours so we have gone back to our natural teenage weight", but there are still the germs here, in my body ... that is the reason I can not to slim
.
Rica, congratulations!
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Jan CR /Prague; On CAPs:12/01/2005; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni. January 10 - still improving