Not so many miles to go

Submitted by katman on Wed, 2009-11-25 11:44

My six months of constant flagyl are over and I have survived it. Not only have I survived it, I have greatly benefitted from it. 

Last January I had stopped all abx, thinking I was done.  I had two glorious months then by May had sunk with incredible swiftness almost back to the level of my worst.  My husband (pediatrician) called Dr. Stratton, who put me on a six month five abx protocol, including two 500mg flagyl pills every day.  I hit the floor pretty fast, but gradually picked myself up over the next few months.  But....I was STILL reacting by the end of it and am now on NO FLAGYL, but instead caffeine and the other four abx.  Six more months.  OK.  As I said six months ago - I can do this.  It is easier than when I began the whole thing five years and almost three months ago. 

This blog was to have been written a week ago, but I got a terrible cold, with laryngitis, cough, and all symptoms of a really bad cold.  But, for the first time in decades, it did not go into my chest, with a very deep cough that lasted for months and months.  I am still coughing but it is so normal!

It may be helpful to list my symptoms that are gone.  Lists like this are problematic because, unless they are written down, more and more are remembered.  I will list those that I remember and add to it, anyway, because I think it may be helpful for those of us who are still lost in the swamp to know that these things can go away.

My fingers are no longer numb, the feeling has returned  to normal on my right side.  This was enrtirely numb from mid ribcage to the tips of my toes.  My vertigo is gone, for the first time in my adult life.  My right arm gains in recovery of use slowly, and my balance is better all the time.  And my strength is slowly returning.  That is depleted by flagyl somehow and can return in surprising bursts.   I have not recounted the tiny things like skin that doesn't need dozens of applications of hand lotion every day, flawless cuticles for the first time in decades, recurrent little skin infections that are all gone, a right foot that doesn't look and feel like a piece of raw liver, iritis that is gone after twenty-five years, and clarity of thought that is slowly returning.

Again I say, we don't know what we are going to get till we are done.  It takes  forever but the top of the mountain is closer every day.  For some of us, there is something else going on, but if this is part of it, we are miles ahead of those who never took the first step.

Rica

 

Happy for you Rica!!!! This post gives hope. Thank you for writing, Patti
FMS,CFS, 15 years,CPn antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAP end of Dec. 08 mino.100 daily, azith. 250 MWF all supplements,compounded T3 therapy.

Thank you, precious! Happy holiday!

 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

Rica, Thanks for sharing your update, lots to be thankful for, you are such a trooper.   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

  Thank you Rica.

  yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MS (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Thanks for sharing Rica, Very well done with your CAP and now super CAP!!!

I hope you  feel very well now and are totally cpnfree!

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

Rica,  You are a real inspiration to all here. Thanks for the super update. 

 

Bonnie

started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Rica, what a great blog for those who are struggling to read. Every one of us is different and will have different rates of recovery. However,you have been a shining example of someone who never gives up and keeps on going. Your success is evidence of your strong will and great courage. Keep up the great work,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

Red

Lovely to hear, Rica!   Congratulations!

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Rica, reading your posts has kept me going many times! 

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

As expected, some symptoms have dribbled back into memory:  I used to rest on our bed looking at the ceiling when changing clothes or whatever took me there.  The ceiling flowed much like a fairly swift river - there is no other word for it.  It is what is called "beadboard", so is made of boards with seams every couple of inches.  That is gone and I don't miss it - it was clearly abnormal and probably was caused by the same thing as my vertigo which is also gone after being with me for about fifty years. 

For years I have had awful aches and sore muscles - actually painful to push on, but it helped.  My seat bones and my right scapula were the ones to go last - actually within the last six months.  And all bladder and bowel problems - and they were very bad - are entirely gone.

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

Rica, am I glad that you posted this testimony of persistence, showing that people who have a harder time than others with the treatment will eventually arrive at the top of the mountain, or at least, in the case  of MS, nearly at the top..............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.

Sarah, My husband researched the company that is coming out with Fampridine (in the USA) at the end of jan. They are also researching medicines that will help stimulate nerve regeneration. So there's even hope of seeing the top of the mountain with MS. We can tour Paris together.

 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

That is so wonderful.  I am so happy for you.  Lynn

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynn,

Did you see my forum posting about cfs? There's hope for you too.

To repeat, this was in a recent Science News:

http://sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome

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

YEAH RICA

How amazing - 6 months straight flagyl...you are a trooper to say the least.  I am still struggling to get through my 5 days at 1gm total a day!

I am soo happy you have had many windows open up for you.  Keep up the good work!

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<