Long and hard - but it works.

In 2004, I believe it was, I began this incredible journey, adventure, trial, name it what you will.

I have recovered more of me than anyone ever suspected was possible.  After many years I stopped all abxi last January because after taking my daily doses, I was no longer having any reaction.  I still continue with NACi, 30,000 units of sublingual B-12, all the other supplementsi, lots of vegerables, good exercise - in other words, trying to live well.  I do have the essential goat milk ice cream milkshake every night when we come in from the barn.

What has continued to happen since I went off abxi is amazing and most welcome.  Improvement continues.  As I mentioned before, my doctor calls me his "miracle".  This is a designation I am only too happy to accept.  

For years I was unable to lift my right foot off the floor at all and can now lift it almost straight out in front of me.  It still won't go very far to the back, but it, too, is coming.  My stomach muscles have been virtually totally numb fo years also.  For years I said I could skin myself and I wouldn't feel it.  Not true anymore.  The feeling is coming back as is the strength.  

My walking has improved, too.  Stay with it, fellow sufferers.  There are ups and downs, but the alternetive is only down, at least in my experience.

Rica

Comments

wonderful to hear from Rica!

So good to be reminded of your encouragement...I am back at square one with my cPni..right now looking for somehwere to tun. if you might remember, I had a stroke in Dec 2015..they put me on something called Eliquis for my A-Fib..a new type of blood thinner to prevent another clot if I should go into fibulation..anyway..I got very ill from Eliquis and not wanting to try another drug of the same type - lots of lawsuits on those new drugs - I was finally put on Coumdain.  I keep my INR at 2.0 - 2.2 - have  home coagulaion meter to test my blood.

My problem is this - I wanted to get back on the Stratton Protocol which got rid of my cPn in the past ( 1999-2004) after which I had 7 years of wonderful health.  Then I begn to decline and taking care of family members, I did not do what I was told to do to keep it at bay- NACi 1200 mg BIDi for life...as my symptoms returned and I ignored them...But now, I find myself spiraling into all of the symptoms I once had...my quality of life has gone very much downhill and i stopped treating it when I had the stoke...my doctor and I have read a lot about azith not being'safe' to take if you are on coumadin.  My doctor does not want to go further. meanwhile I am very ill and kind of hopeless..looking for someone to guide me as to how I can treat my Cpn, if this is even possible..I am allergic to Sulfa and very allergice to Flagyli. I am giving this one last try, before I give up.

RICA - I can't tell you how very much I needed to read your message of hope when I came back to this site today! I am so thrilled that you continue to do well. Diana

Diana, if you really are

Diana, if you really are allergic to metrodidazole (flagyl) then I guess that Darren's way of treating his Cpni is the way to go for you, because unless you can do the final part of the Cpn treatment, you will always have to be on it forever.  You already know that the feeling wonderful but without taking an imidazole, does not last, when going down the antibiotic route. 

If you have space in yur garden you will be able to grow your own cure!..........................Sarah

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.

Hi Sara - I am still trying

Hi Sara - I am still trying to remember how to navigate this site so that my posting do not disappear.

I am in touch with Darren and will see what he has to say. I did experience an anaphylatic reaction to a very small dose of flagyl and on that basis, Dr. Stratton told me to never take it again...but I am open to trying another one of the "azoles". Back then only flagyl/metroi was on the radar and not everyone used it! 

I did however get to the point after 5 years on the protocol and my titers returning to a negligible number consider "normal' in people. After going off the protocol, I had 7 years  of full out health and energy. My biggest mistake was not taking the NACi 1200mg BIDi for the rest of my life as Dr. S had recommended..and my titers went creeping back up.

My wish is to go back on theprotocol that helped me back in 1999-2004.  I am mainly worried that I may not be able to learn a new protocol if it is complicated.  And supplementsi and natrual methods can be very expensive...there is rarely much back-up by doctors when you don't take their rx meds...and my doctor is very naturally inclined..but the coumadin I have been put in created a stumblng block because he simply does not know how it will afftect my taking other things. I know I cannot take Turmeric on coumadin and I used to rely heavily on Ibuprofen and now I cannot take it...I got so that I gave up and decide this was it for me... I honestly gave up and decided I am on my way down. then I thought of this site...

so now,  I am only on day one of "not giving up' so we will see where this takes me!

Thanks for your comments, Sara..and I am SO glad to hear you continue to feel so well.  You have been an inspiration!

Diana

Diana, you might try

Diana, you might try tinidazole, since it is now available in the US, but you would have to be very brave after your anaphylactic shock with flagyli.  However, all in all, I think you would be safer to try Darren's herbs, especially since your doctor is naturally inclined.  You might even find that you can take less coumadin, which must be a good thing................Sarah

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.

Hi Astrodiana,There maybe

Hi Astrodiana,

There maybe other ways to treat CPni. I am available to maybe help somewhat!

PM if you wish.

Regards

D

The Greatest Risk of all is Not taking the Risk...

thank you Darren!

I will try and figure out how to PM you!  I am encouraged that you were able to do this differently! and lo0ok forward to what you have to say. 

Diana

click on my name and it will

click on my name and it will bring you to my account.. in there at the bottom under Blog there is a tab called "message this user" and off you go (-: .... we will see if I can add some benifit

Rgeards

D

The Greatest Risk of all is Not taking the Risk...

Congratulations

Hi Rica,

and congratulations to finally making it! Your case did always make me a bit uneasy, as it seemed a very second best to have to be on antibioticsi indefinitely.

Knowing you keep up the good work, I know you'll get a lot more improvement, and hope you'll eventually get rid of all issues.

Best wishes

Borrelia/Cpni arthritis: joint, skin, eye, CNSi, respiratory, UG involvment; fatigue. Borrelia Elisa&WB IgGi, and CPn IgG and IgA pos, HLA-B27 neg. CAPi 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?

Hey Rica, Oh so wonderful to

Hey Rica, 

Oh so wonderful to hear your news.   I have wondered about you often.   I pass by her occasionally and look for names I remember and then read some of the post and often I dont find anything posted by you.   So I wondered.   And great to know it was your getting so much better and at the end of treatment that you were otherwise occupied with life!!!

I will be down around the PA, Del, MD line this summer and wonder how much of a trip it would be to meet your goats in person!     I finished the Vet Tech program and passed my Boards and am waiting for the license which is "Pending"  but the state is underpowered so not sure how many more weeks I have to wait till it is a final go.

Are you still showing your prize bovids! Now that I know you are off and on here I'll look for you more often.    

Again so happy for you.

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
  • <

Louise, did I reply?  It has

Louise, did I reply?  It has been so long and so busy that I dodn't remember!

We would love to see you.

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

Congratulations Rica  That

Congratulations Rica Smile That gives me hope of someday finishing this.....

I am curious about Rifabutin, you switched to that from Rifampine, right?

How long did you use it for, and do you think it helped you alot?

Jesper

Treating PPMSi with Azithromycin 250 mg every other day, Doxyi 100 mg BiDi, Coconut oil 4 times daily,  five flagyli pulses. Been sick since June 2009. Having good success and very few symptoms.

Yes, I switched to Rifabutin

Yes, I switched to Rifabutin - and it hit me very, very hard.  I finally found the dosage I could handle - two capsules a week, I think it was. I began with the suggested dosage of two capsules a day for two days and ended up in the hospital.  It is very effective with a half-life of forty-seven hours, I believe.  Be careful, but take it regularly, not occasionally.  It definitely works.  I was on it for several months, after having been on Rifampin for years.

My inprovement continues - it is slow, as always, but I am walking around breathing.  I really don't think I would be if I hadn't done this long, difficult undertaking.  I certainly wouldn't be walking at all.

Stay in touch - I will be your cheerleader!

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

Thank you, Rica. Support is

Thank you, Rica. Support is always appreciated :).

I have been on Rifampin for years as well, and everytime I take it I do feel that it works. It makes me less tired, and a little more energetic afterwards.

Do you get the Rifabutin from a doctor? If you get it online please PM me the source. 

Jesper

Treating PPMSi with Azithromycin 250 mg every other day, Doxyi 100 mg BiDi, Coconut oil 4 times daily,  five flagyli pulses. Been sick since June 2009. Having good success and very few symptoms.

Sorry - just saw this.Yes, I

Sorry - just saw this.

Yes, I got it from my doctor.  Don't know how to get it online.

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

Conatulations, Rica. I am so

Conatulations, Rica. I am so glad you have finally been able to kick the habit and still keep going forward.

Love, NancyTongue Out

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, this is so true:

Rica, this is so true: stopping taking antibioticsi because the infection has gone does not mean that that is as good as it gets.  Further improvements can come in different ways: either continued gradual improvement or something that can take you totally by surprise.

It took you a long time to feel able to stop the treatment but with me I was able to a lot sooner, but I am glad that we have both ended up in the same place........................Sarah

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.