Not so many miles to go

My six months of constant flagyli 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 abxi, 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 abxi 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 infectionsi 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

 

Comments

YEAH RICAHow amazing - 6

YEAH RICA

How amazing - 6 months straight flagyli...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

 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

That is so wonderful.  I am

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

FMSi/CFS 1995. tinnitus">i, ibsi, sinusitis, EBVi, NACi 2400mg, valtrex, cortef, armour, doxy, biaxin, tinii, vita c 5 - 10,000 daily 

Lynn, Did you see my forum

Lynn,

Did you see my forum posting about cfsi? 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_c...<

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

Sarah, My husband researched

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 MSi. We can tour Paris together.

 Nancy

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

Rica, am I glad that you

Rica, am I glad that you posted this testimony of persistencei, 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 MSi, nearly at the top..............Sarah

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

As expected, some symptoms

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 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica, reading your posts has

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

JeanneRoz

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Lovely to hear, Rica!  

Lovely to hear, Rica!   Congratulations!

Treatment for Rosaceai<

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

Rica, what a great blog for

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 Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Rica,  You are a real

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

 

Bonnie

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

  Thank you Rica.  yılmaz.

  Thank you Rica.

  yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MSi (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,

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

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

Best Wishes, Maria

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid">i.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life

Rica, Thanks for sharing

Rica, Thanks for sharing your update, lots to be thankful for, you are such a trooper.   Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Thank you, precious! Happy

Thank you, precious! Happy holiday!

 Nancy

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

Happy for you Rica!!!! This

Happy for you Rica!!!! This post gives hope. Thank you for writing, Patti
FMSi,CFSi, 15 years,CPni antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAPi end of Dec. 08 minoi.100 daily, azith. 250 MWF all supplementsi,compounded T3 therapy.