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 [1] brings on some more symptoms.   Could it be because of the loss of the immunomodulatory attributes of doxyi [8].   The plot thickens. 

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Michèle (UK) GFAi [9]: Wheldon CAPi [4] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [10] pulse. Zoo keeper for Ella, RRMSi [11], At worse EDSSi [12] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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 [1] for that month, I didn't feel well. I decided I felt better on than off except on flagyli [10] days.

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On Wheldon protocol for MSi [14] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [10] Pulses start end Sept., LDNi [15] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Michele, That's exactly what I think. He's currently taking 4,000IU of D3, Lauricidin, and 2400mg of NACi [16], so he's not exactly "naked."  That's plenty to be eating away at this and that bug.  Plus, I think his immunei [17] system is healthier than when he started the protocol.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [4] since August 06, Cpni [5], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [7], elevated heavy metals, gluten+casein sensitivity. 

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 [1], 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.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [4] since August 06, Cpni [5], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [7], elevated heavy metals, gluten+casein sensitivity. 

Joyce - Great news about your trip!

Agree with Michele - might well be loss of immunomodulation from azith and doxyi [8].  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 [18] of course).  Hope you guys find the same thing is true for Steve - tough for a paesano to give up pasta and pizza.

 

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Daisy - Husband on CAPi [4] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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

 

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CFIDSi [19]/ME 32 yrs, FMSi [20], IBSi [21], EBVi [6], CMV, Cpni [5], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Joyce, How do you know low porphyriai [18] 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

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diagnosed MSi [14] Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi [8] 100 mg. 1BID. roxyi [22].150 mg.? BID,adding rifampin soon, pulsed tinii [23]. every 3 weeks, as of oct.17/08, no rifampin as yet, just doxy and 1 gram daily of IV ceftriaxone, soon to

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 [18], some of the same multiple chronic infectionsi [7], 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 [1].  My husband has gone back on the basic CAPi [4] after just a few days off; and yes, I believe he was still experiencing porphyria while he was off abxi [2].

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [4] since August 06, Cpni [5], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [7], elevated heavy metals, gluten+casein sensitivity. 

Oops! Duplicate post.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [4] since August 06, Cpni [5], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [7], elevated heavy metals, gluten+casein sensitivity. 

Joyce- I've also experienced apparent "die-off" a couple days after being off abxi [1] 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 [24] also releases a build up of porphyrins, endotoxinsi [25] and other intracellulari [26] 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.

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CAPi [4] for Cpni [5] 11/04. Dx: 25yrs CFSi [27] & FMSi [20]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [23] 1000mg/day pulses; Vit D2000 units, T4 & T3

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 [4].

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 [28] (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 [29] 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.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [4] since August 06, Cpni [5], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [7], elevated heavy metals, gluten+casein sensitivity. 

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

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On Wheldon protocol for MSi [14] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [10] Pulses start end Sept., LDNi [15] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

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.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [4] since August 06, Cpni [5], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [7], elevated heavy metals, gluten+casein sensitivity.