Steve J's Update: He's Off...and On

We are back from our trip and sort of rested. Even though I had given Steve something to even-out his emotions, he still wept all the way as he walked our oldest daughter down the aisle.  The elevated emotional state made him a bit tottery, but she did a good job of anchoring him.  He even made it fine through the traditional father-daughter dance.  Thankfully, he had more energy than usual on the wedding day and lasted well through the long reception afterward.   Thanks to the cooler weather (and not working), Steve was in good shape for the entire trip, and he even cheated on his gluten/casein diet quite a bit without much ill effect (his leaky gut is much better than it used to be). So now it's time to get down to the serious business of shaking up the protocol, bracing for a new wave of die-off reactions when he makes the coming protocol shuffle.

Steve saw his LLMD while on the trip, and he's lined-out to start tetracycline plus fluconazole several days from now. He will also continue the azithromycin. The plan was to lay-off fluconazole for two weeks and to stop the doxycycline too. The doc OK'd taking away the azithromycin for this two weeks also. So Steve was supposed to have a 2-week abxi vacation, but I'm cutting it off. He's been off for 5 days now, and he's not doing well at all. The first 3 days, he appeared to be having more die-off reactions than when he was on the abxi.  Now, he's just even more fatigued than his usual deep fatigue, and he's been falling down quite a bit.  He even dented our car when he fell while on the driveway.  He went back on doxy and zith this afternoon. 

Comments

Thanks wiggy.  I'm still

Thanks wiggy.  I'm still not seeing any particular die-off signs since the day after he started the tetra and fluc.  On the up-side, his balance seems a bit better, and so does his bladder control.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

All good news - glad he is

All good news - glad he is tolerating the new cocktail.

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

As of Saturday, August 2,

As of Saturday, August 2, Steve started concurrent courses of tetracycline + fluconazole + azithromycin. This change falls at Steve's 2-year anniversary mark on the CAPi.

An interesting thing happened last week, and I would like to make a point of mentioning that it happened before he started this newest "med-leg" of his journey. I've been fixated on fighting biofilm for a while now and gradually adding more and more proteolytic enzymes to Steve's regimen. He had already been using a broad-spectrum digestive enzyme with meals for about a year. Then Dr. X recommended he use a particular pH-tolerant enzyme between meals several months ago. A few months ago, I added serrapeptase to the mix, and then, a few weeks ago I added nattokinase too. At the beginning of last week, I added Lumbrokinasei (Boluoke), and something about him changed. No more cold hands...no more cold genitalia. I haven't taken his temperature yet to see if that has improved, but I'm very impressed with the warmth of his "appendages." Okay, yes, it's 107*F here, but we keep our home cool...much cooler than Steve would like. Something else, his driving has become more aggressive---that interspersed with waiting at intersections for cars that seem half a mile away and slow reactions to green lights.

Steve only had a very mild die-off reaction to starting the tetracycline.  The dosage right now is 500mg twice a day.  At the 2 week mark the dosage will increase to 750mg twice a day.  At that future level, the BBBi penetration will increase meaningfully, and we're set to see what will happen.

I'm changing.  These days I'm feeling more relaxed about all this.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce- I've also

Joyce- I've also experienced apparent "die-off" a couple days after being off abxi when I took a week off here and there. It's very curious. One theory I have is that the restoration of replication (conversion from cryptic back to RB's) which is then followed by cell lysis to release the newly formed EB'si also releases a build up of porphyrins, endotoxinsi and other intracellulari accumulations. Just a theory trying to account for this odd sequence.

Mostly I'm very glad to hear of Steve dancing at his child's wedding. I suspect he wasn't the only one to have uneven emotions though! Congratulations to you both.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Thanks everyone for your

Thanks everyone for your comments. Loulou, It's easy to do...you are merging my husband Steve and Daisy's husband into one character. They have much in common: Italian ethnicity, leaky guts, too little stomach acid, degenerative neurological conditions, porphyriai, some of the same multiple chronic infectionsi, and hardheaded wives who won't give up trying to save them.  Daisy's husband is on a rotational diet and on heavy duty abxi.  My husband has gone back on the basic CAPi after just a few days off; and yes, I believe he was still experiencing porphyria while he was off abxi.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Oops! Duplicate post.

Oops! Duplicate post.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, How do you know low

Joyce, How do you know low porphyriai of course? Just because he's on a rotational diet and has been off antis. for a short while can one not still have porphyria? I think they can. Let me know , please???????????

Best,

Loulou

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

Joyce & Steve,it is great

Joyce & Steve,

it is great to hear you had a great time at the daughter's wedding!  What a special moment walking down the isle!  I cry at dog food commercials, so weddings....yoi!

blessings & prayers on your journey

 

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<

Joyce - Great news about

Joyce - Great news about your trip!

Agree with Michele - might well be loss of immunomodulation from azith and doxyi.  Even the Diflucan is immunomod.

Given my husband's reaction to tetra it will be interesting to see how Steve fares.  Really well I hope !

Also great news on the gluten/casein.  Same thing has happened for my husband.  His "leaky gut" is so much better.  Now I never notice a reaction to any of the formally verboten foods.  

These days -  he's just on a rotational diet ( low porphyriai of course).  Hope you guys find the same thing is true for Steve - tough for a paesano to give up pasta and pizza.

 

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

Daisy on her own CAP 11/2012. 

Joyce, So happy all went

Joyce, So happy all went well on the wedding day and vacation - that is excellent news. I am sorry he isn't feeling great now. I had a great vacation but am exhausted - so maybe he hasn't fully recovered from the trip. When I was off abxi for that month, I didn't feel well. I decided I felt better on than off except on flagyli days.

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

Thanks wiggy.  We did have

Thanks wiggy.  We did have a fine time, and I know you and your family must have too.  I hope you can find some renewal time before you have to focus on back-to-school activities.  It's really odd to feel worse off the abxi, isn't it?  I was expecting a "breather" for Steve before his change to tetracycline, but there's no rest for the weary in this game.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, great to hear that

Joyce, great to hear that your special day went well and that Steve was able to enjoy the whole day.

A bit of a surprise that being off the antibioticsi brings on some more symptoms.   Could it be because of the loss of the immunomodulatory attributes of doxyi.   The plot thickens. 

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Michele, That's exactly

Michele, That's exactly what I think. He's currently taking 4,000IU of D3, Lauricidin, and 2400mg of NACi, so he's not exactly "naked."  That's plenty to be eating away at this and that bug.  Plus, I think his immunei system is healthier than when he started the protocol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.