The Long Road Travelled

Submitted by katman on Sat, 2009-03-28 11:58

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 MS 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

Rica           

I'm so glad that you've been here to shine the way ahead.  I hope that everything goes well this spring!

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

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

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Well, if your doctor said so we had better do as he says!  In the meantime though, you had better watch out for a phone call so that we can compare accents...................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

So happy to hear this story. A miracle, this site. Best, Chris
CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections. Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

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 

Cpn since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid.All classic cpn,porphyria and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NAC, high vitamin D3. CAP for over 3 years. Back to work and life

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 

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Congratulations on your good health and heart felt thanks for your encouragement to all of us starting after you. You really have been a guiding light for those of us with MS who come here after being relegated to the scrapheap of orthodoxy. I do hope that kidding goes well for you this year.

speedbird

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 CAP 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

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

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

MS for 20yrs. CAP since Jul 07, NAC 2400mg, Doxy 200mg daily, Azith 250 mg MWF, Flagyl for 4yrs.

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

 

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<

Rica, Cheers! Well done - I am so happy for you and you have been such a huge support here to so many people. All we can do is keep talking to doctors and one day I have to believe this will change - I can only hope.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Rica thanks for your update and congradulations on completing your course of treatment.  Does your one round of intermittent CAP 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

  • 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

Thanks for your precious report: truly inspiring for all of us (expecially for the ones - like me - who are about to undertake the first pulse ever!).
< SPMS - EDSS 7 > < NAC 600mg X 2, Doxy 100 mg X 2, Azith 250 mg MWF, Flagyl pulses, green tea, curcumin, flavonoids + all the supplements listed on Wheldon's Protocol (and possibly more) >

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 abx, probably with Biaxin, Doxy, and flagyl.  The occasional right leg numbness after I stopped abx was transient and has not returned.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Ooh! ANOTHER skinny lady!

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Arttile, be quiet: it'll happen to you in due time. People who have never over eaten tend to gain weight because of all the germs they end up carrying around.  Rica and I have got rid of ours so we have gone back to our natural teenage weight.Image removed...................Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 Image removed..

 Rica, congratulations!

On CAPs:12/01/2005 till March 2013; 20 years CFS,IBS, fibromyalgia; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension... 

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.  Image removed.

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 CAP 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!  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

skinnny.....

weeeeee, I look forward to that!

 peace

r

 

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<

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!Image removed.

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 is done, I'll just look like a skinny old broad. You know, skinny people wrinkle more! Anyway, I'm not so much complaining about my weight as my lack of control over it. I could live very happily with a loss of 5 or 6 pounds and I'm not so misfortunate now as to be overweight. 6 pounds would actually put me at my high school weight which was 7 pounds over my adult weight (Twiggy influence). Don't take me too seriously.

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Ah, Nancy, we never take anything too seriously nowadays (except our health, I suppose), do we?  Image removed.     (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? 

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

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. 

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13