Joyce's PBS Update: A breakthrough

Submitted by cypriane on Mon, 2008-08-04 10:24

Those who "know" me know that I have Potbelly Syndrome issues and other issues that are equally pedestrian. The only difference between me and billions of other middle-aged women with pudgy midsections is that I discovered that my common maladies are linked to chronic Cpn and other chronic infections, because I found this site while investigating meaningful treatment for my husband who has MS.

Finally! a change for the better! I finished a one-week Flagyl pulse last weekend. It was # 9 or 10 (I've lost count).  About the middle of this past week I began to feel the return of like I haven't felt for a long time.  I had begun to think I was just getting old prematurely, and nothing could be done.  Would I too die in my early 60's of heart disease like my father?  An insignificant sign of improvement was once when I yawned, and saliva actually squirted out of my mouth.  Bye bye dry mouth.  It could be wishful thinking, but I think the "permanently" swollen parotid glands under my jaws are shrinking.  One good thing that's been going on for awhile is that my blood pressure is down and very easily controlled by just 5mg amlodipine.  Also, my eyes are wetter and wetter all the time.  I would love to see if my LDL cholesterol, triglycerides, blood sugar, and calcium levels have gone down, but I don't have any tests scheduled.

Arthritis---now there's an interesting subject.  My old sites are generally better.  The arthritis in my left wrist and right thumb that started suddenly this early Spring gives me fits off and on, though those spots have also improved somewhat in the past several days.  I'm distrustful, though, because I experienced an improvement there after the previous Flagyl pulse that didn't last.  I have some gallium nitrate horse "liniment" to experiment with if the improvements don't last.

The return of energy has contributed to a change in my psyche that has been developing for awhile.  As I already said in another thread, I'm becoming much more relaxed, much less manic about all this.  Steve just passed his 2-year mark on the CAP, and there's no doubt in my mind that he is so very much better off than he would have been without it.  And now, it looks like I'll be better off too.


Yipee!   I know that it has been difficult for you to wait the time it has taken for you to see improvements but you are at last rewarded.   I was lucky that I had a visual marker to see my progress with because otherwise it may well have been hard for me too to wait the time it took to see some improvements.   They come and go at times, which is very frustrating but when you look back on the whole of the journey you can see that the base line has shifted upwards towards the healthy goal we are aiming for.

Long may it continue.   By a strange coincidence my doctor has just taken me off bendroflumethiazide because of some problem with my potassium levels and put me onto 5mg of amlodipine to control the blood pressure... I'm hoping this will do the trick for me too.

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

Hooray! I am so glad you are finally seeing some improvements. I always thought you had tons of energy - glad you are getting even more. I can't believe Steve has 2 years in - time is flying and we've stopped aging :)

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.

Joyce, What can I say?! This is wonderful news and, God knows, you deserve it. We're all going to be so much better off for having done this treatment.

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

Thanks girlfriends. I may invent some reason why I should get a blood work-up just so I can know if there is a measurable improvement. Then I'll start working on my oldest sister again...she needs it worse than I ever did.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce -

Funny  but I was just wondering how you were doing on your CAP ! 

 This is good news!  Especially the energy and especially so in this heat!



Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Joyce, nearing my fifth anniversary I would like to congratulate you both on what you have done to help Steve and to what you now seem to be doing to help yourself.  This has really made my day...........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.


This is such wonderful news!    I am so happy for you.  Congrats to both of you!  I needed inspiring today and this is the best kind!  :)

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Likewise, Joyce. You've been such a stalwart on Steve's behalf, and I was wondering how you were getting on. You also are giving proof to the rule of thumb "around 8-10 pulses" for some kind of noticeable corner turn. I'm so glad for you that you are finding help too. Be nice for both you and your hubby to be prematurely youthening! 


CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral


  Sometimes I feel very discouraged.  Your blog post gave hope today.  Thank you for sharing your story with us.  Congratulations on your improved health. 

 FMS/CFS 12 yrs., IBS, Hypothryoid, EBV, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpn, On and off CAP since 10-1-07, Currently on NAC & Delta Fr. E Doxy., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

Wow! If my little blog has made only a few of you a little inspired, I'll have to commit to blogging more like I used to do. Anyway, I'm glad to have splashed some refreshment on this interminable, broiling Summer.

Daisy, on your "janitorial" thread, you referred to my bombardment of Steve's biofilm with proteolytic enzymes as an experiment.  Funny...I hadn't thought of it in those terms, but I guess you're right.  It's especially funny that you should refer to it that way.  I got started on my own, but since very shortly after, I've been following your lead.  I must admit, though, that sometimes I wonder at what level those enzymes might start digesting Steve.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce, Is bromalain part of your enzyme regemen? 

I found it very effective the one time I took it last fall before starting Tinidiazole.  And since it was uncharted territory for me and I had no map I make it a one time only event. 

     I had some superficial knowledge that some herbalists were using it with Bb herbal protocols but felt a bit insecure with my understanding.

I would like to hear more about what you are doing regarding the proteolytic enzymes specifics if you are able to clarify them as you are using them.

Thanks, 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

Louise,  Steve gets some bromelain with his quercetin once a day, and the broad-spectrum digestive enzyme formula has some bromelain in it, but it's not an enzyme I have singled-out to help Steve.

There's nothing too scientific about my proteolytic enzyme campaign.  It's just one of those things that has grown out of researching biofilm and immune complexes, and from asking questions of others with similar interests/needs.  I follow the instructions on the bottles.  I'm keeping my eyes open to any signs that it might be time to back off.  So far it beats the hell out of Warfarin.  You are probably aware of the "enzymestuff" website.  Some of my reading was done there.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity.