A Quandary~Lyme Treatment>Improvements

I don't know where this post is going, sort of thinking out loud, so please forgive me up-front.  Steve is currently in the middle of a 20-day course of Tamiflu for what has developed into a chronic infection with an untypable flu (neither A nor B).  In a few days it will be just about time for another flagyli pulse, AND/OR it's just about time to start a 50-day course of fluconazole as an additional Lyme treatment agent.  And about that flagyl pulse...Steve's Lyme doc agrees that the pulses should be lengthened and says it takes 2 weeks for flagyl to kill Lyme.  However, he thinks that if the pulse is stretched out to 2 weeks, you should go ahead and make it a month-long pulse in order to kill as many of the cystic form as possible.  Steve's last pulse was 8 days long, and he handled it well.  I've considered making the next one either 11 days or a whole month, but frankly, if he starts the fluconazole, I'm unsure whether or not a pulse should be considered at all until we see what the fallout will be from the new med addition.

To complicate matters, last week he used calcium pyruvate for a few days.  The aftermath of the combination of CP with azithromycin for that short time is playing out rather like a type of pulse.  What does that tell us about the demographics of Steve's bug population?  And what does the mild fallout of Steve's last pulse tell us?  Cpn RB vs. cryptic and/or Lyme spirochetal vs. cystic?  Which freakin' bugs are telling us whatever they're telling us?  This feels like trying to play chess and backgammon at the same time.

Last week Dr. X more or less told us he would do whatever we wanted (within reason).  That's quite an arrow to have in your quiver, but the gravity of the responsibility is even scarier than fighting to get every scrap you can get.

Further complication:  Steve will walk our oldest daughter down the aisle in mid-July in Worcester, MA.  After the wedding, we'll go to Schenectady, NY for a few days, and that will be the first time he will have seen his parents in 2-1/2 years.  Whichever treatment route he follows, one, the other, or both, he needs to be past the cycle and in decent form by then (as though that actually would be controllable).  There's no way the next treatment leg will be put off until after the July trip.

This seems like a logic problem that I should be able to work out, but instead, I'm in a quandary with a very bad case of Busy Head Syndrome.

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

Comments

Joyce, A thought to

Joyce, A thought to consider, and there may be no way to do it (I can't recall your current cholestyramine regimen) up you cholelstyramine if at all possible for the trip up and the several days before the wedding to hold the emotions stable.  Also, at my son's wedding and also my daughter-in-law's sister's wedding ( just back from the weekend and the over dancing event) the Mother of the bride walked down the isle as well.   Now if you did this but took Steve's other side you would be there to give balance and assistance in a not so obvious way.  Or you could walk behind them, a little novel but same thing, you could walk up quickly and lend a less obvious hand???   Just an off the top of my head suggestion.

I'll be waiting for your update after the joyous event.

Louise

CFSi. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi,Doxyi, Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini Die-OffExperiences.

  • 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
  • <

Hip Hip Hooray to good

Hip Hip Hooray to good walking days! Are you about done with the fluconazole? On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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.

Wiggy,  This is

Wiggy,  This is exciting!.  Steve has 26 more days to go on the fluconazole.  Then it will be 3 more weeks before we leave on the wedding trip/LLMD appointment trip.  It would be terrific to do something remedial in those 3 weeks, but I'm loathe to initiate anything during that time that might worsen his condition during the trip.  Walking our daughter down the aisle is numero uno in Steve's mind right now, and he wants to make as good a "show" of it as possible.  Unfortunately, I've noticed that high emotion brings his physical and mental functions down a few notches, so he might not walk as well down the aisle when that moment arrives as he will be walking in general on that day.  And he gets overly emotional very easily (I blame azithromycin)---he shed tears every time David Archuleta received his critiques on American Idol.

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~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, both the Davids were

Joyce,

both the Davids were great!  Cook is an all round better muscian at this time.  When David Architleta sang I had tears, I too get all weepy when the critics sound off.  He is just a wonderful soul a beautiful person & he was scared spitless.  Both performers were moved to tears at times, it is a big deal pursuing your dream & having it unfold before you.  they will both have careers imhoi.

Now I look forward to so you think you can dance!  I love that show, awesome athletes!

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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<

I hope it goes well down

I hope it goes well down that aisle. I am the same as far as emotions and physical function and at times very emotional. I was crying during idol too - how crazy. But, I was voting for David Cook :). I think the 3 week break can only help. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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 Ruth.  Steve had

Thanks Ruth.  Steve had another bout of good walking today, or a streak, I should say.  It lasted from early morning until 3 in the afternoon.  At long last, it's really happening!  God bless all of you, Drs. Stratton, Sriram, Mitchell, et al, Wheldon, X, LLMD, even the rejected integrative medicine/"so-called" LLMD doc (because he prescribed a few months of Nystatin and ordered the Igenex test), doxycycline, azithromycin, flagyli, fluconazole, Valtrex, acyclovir, amantadine, LDNi, Lunesta, Metanx, Nystatin, Vfend, Tamiflu, Celestone, hydrocortisone, Lauricidin, TD glutathione cream, Benadryl, Questran, charcoal, glucose tablets, smarties, B12, P5P (B6)+magnesium, zinc picolinate, the Whole Approach Anti-Candida Protocol, digestive enzymes, betaine HCl, detox baths/footbaths, gluten+casein abstinence, chelation, Hevy Metal Support, dental amalgam removal, all the recommended supplementsi (except L-glutamine), cellulose powder, apple pectin, gamma oryzanol, astaxanthin, Kolorex, Seriphos, Memory Sustain, NeuroNutrients, IgGi 2000 DF, Candex, Acid 2 Alkaline, and so on. 

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~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. 

The weekend was not good for

The weekend was not good for Steve---really lousy walking, resistant porphyriai, foggy and tired.  Last night he added a before-bed dose of glucose to the before-meal doses.  This morning he felt well enough to exercise on the stair-stepper.  I observed him walking a little after his exercise session and "accused" him of improved walking.  He gruffly denied it.  This afternoon he called to report that he was feeling good and walking well (comparatively).  I barely recognized his voice, it was so clear and strong.  No mush or slurring.  And there was a very clear mind behind that strong voice.

So is this how it happens....the long awaited improvement?  Fits and starts, spurts and slides?  Since that unexpected bout of good walking two weeks ago, I was beginning to think it might not happen again.  That bout was preceded by pain/discomfort; this one was preceded by much worse walking.  Oh well, we are full of joy even if this bout fades fast like the prior one.  Feels good to puff up like a toad with exuberance.

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~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, this is great news

Joyce, this is great news for you & Steve.

sounds like one of those window openings Rica talks about!  I hope it lasts or comes back really soon for a longer visit.

JimK, re the iron issue, I was anemic about age 19 right after I was a victim of double pneumonia after a long bout with a cough that wouldn't abate & the attack of the CPni!

I suppose that the chlorella is giving iron for the beasts!  When the beast are slayed I can quit the chlorella!

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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- Sounds like Steve

 Joyce- Sounds like Steve is really owning the treatment and managing a lot of his side effect measures. The direction of the treatment sounds right on the money. I'm very glad for you both.

Chlorella and iron? I'm shocked I didn't know that. Cpni is an iron using bacteria, perhaps that's why cholrella didn't seem useful to me. I was very low iron before I started CAPi treatment, and that's never been a problem since.

CAP for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

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

Good, bad, and overly

Good, bad, and overly ambitious..........Steve has been in good shape since the Tagamet+pyruvate dose he had on May 9.  The next morning he buzzed around the house at high speed, walking nearly normally for about 30 minutes.  Our two dogs were so impressed, they stayed on his heels the entire time.  Usually, they keep some distance so he won't fall on them.  He's had a 2-hour buzz this week, but no more near normal walking.  Continued use of the Questran and glucose have controlled the porphyriai pretty well since then.  He slipped down a notch or two yesterday afternoon, so he chose to forego his evening meal and supplementsi again in favor of another dose of Tagamet+Questran.  This morning he happily announced (with no solicitation from me) that he felt really good.  Not very energetic, but not bone tired, just good.  I asked how his balance was---"not great" he said, so I reminded him that there was a disparity between his energy and his balance that could cause a fall.

Steve just called from work, looking for reassurance I think.  He had moved a crate containing electronic fixture components off of a forklift and dropped it.  Nothing was broken, but he was unnerved by the incident.  This was purely over-ambition.  He's not in shipping and receiving, he was just impatient to get at the goodies in the box. Plus he already learned the hard way last year that he shouldn't be trying to lift these boxes and crates.  I asked how his upper body strength and dexterity were doing.  He said "Oh, that's been going downhill even more lately."  DUHHHHHHHHHH!  There's a tidbit I wish he'd shared earlier!

One thing I have observed in the past couple of days is delayed reactions and delayed thinking.  Not foggy, just delayed.  In reading about what to expect from this fluconazole course for Lyme, some veterans have indicated that the die-off reactions really kick-in heavily after 1-1/2 to 2 weeks.  I'm hoping that the delayed actions, reactions, and thinking and upper body weakness/lack of dexterity are signs of that.  So, I gave him a pep-talk, told him that he was supposed to be having problems like those right about now, and we celebrated how well we were managing the porphyria/LPSi/HSPi problems.  Hope I wasn't lying.

  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~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. 

Oh boy, Its really a

Oh boy, Its really a juggling act and that crabiness you decribe I think we all have. My hair dresser asked me - do you get really angry sometimes? She has a co-worker with MSi that gets nasty. I said you should of heard me yelling at my mom and daughter about 10 minutes before i came in. Yes, we are tired, sick and crabby and the ones we love most usually get to hear about it. I just started glucose myself and am thank-ful for all the discussion here on porphyriai. On Wheldon protocol for MS since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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.  By the end

Thanks Wiggy.  By the end of the workday yesterday, Steve was in bad shape again.  He had laid off taking the glucose during the day.  I gave him some glucose tablets, but he was a bear all the way home.  He protested about stopping at the drugstore and swore whatever I was going to buy wouldn't work.  I bought some Tagamet, and gave him some with calcium pyruvate after we arrived at home.  You would have thought I was asking him to swallow blue marbles or something equally useless and outlandish.  I asked him too soon afterward how he was feeling.  The tone of his voice was so nasty when he told me he was horribly tired "just like every other night," I went to our bedroom and closed the door, hoping to sleep just to escape consciousness.  Couldn't sleep, rejoined him about 45 minutes later, and he said "I'm better, and I have some energy."  He even asked me to explain what was going on and listened.  Well, he didn't eat and didn't get his after-dinner supplementsi, but he got what he needed the most.  He switched back to Questran in the middle of the night, and he's taking glucose today.  So far he's just so-so, but we're both hoping for a good weekend.

I want to thank everyone on the site who has contributed to the body of knowledge here on porphyriai management, and I want to apologize to Steve and to all of you for being in denial about it for so long.

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

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, So happy to hear its

Joyce, So happy to hear its going so well and great job with the prevention measures! On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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.

Joyce & Steve, this is

Joyce & Steve,

this is wonderful news.  I am so glad you armed yourself with as many moppers as possible & just kept adding them as needed.  I like glucose as well, but it just seems to keep putting weight on.  When I added yaeyama chlorella I was able to cut back on it.  Now I just add it when I have a tummy ache or sxi just pops up unexpectedly.  The Chitosan has been helping out as well, but timing is an issue with the B;s & oil vitaminsi.

Steady wins the race!  I am glad you both are keeping a steady pace.

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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<

Thanks Ruth,  It's

Thanks Ruth,  It's perfectly OK for Steve to put on weight from anything since he has lost so much.  I don't want him to overuse glucose, though, due to the possibility of boosting yeast.  I have to say again Ruth that it surprises me that you use chlorella.  Didn't you say you had congenital hemachromatosis?  Chlorella can boost your iron.  My iron shot up after I started using it, so I only use it occasionally.

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~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. 

thanks Joyce for the info on

thanks Joyce for the info on Chlorella & iron boosting.  I do have to watch that & my blood is tested every 3 months.  The iron readings for hemochromatosis are kind of wierd.  The actual iron level may not show as high, the TIBC will show low, but the saturation index will be high.   It hasn't changed since starting the chlorella.  The worst thing that can happen, now that I am aware of my genetic disorder, is that I would need a phlebotomy if the saturation level was very high.  There is nothing more that can be done.

I must say, if weight wasn't an issue & I could manage the yeast, I would rely heavily on glucose to snag the toxins!  I have about 30 lbs to lose when I get the beast under control & can actually start doing a heart raising cardio workout.

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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<

The fluconazole course (50

The fluconazole course (50 days) to treat Lyme was started April 29.  Since then Steve has experienced porphyriai and die-off symptoms, and so far I'm very pleased with how the management of the fallout has gone.  He has a handful of counter-porphyric, counter-LPSi, and counter-HSPi agents at his disposal, and he has used all of them.  He's used Questran, charcoal, glucose, B-12 (sublingual hydroxocobalamin), Benadryl, vitamin C, and he's even gotten a little help from a couple of elements in his Total Approach anti-candida protocol too, specifically, the Bentonite clay and the psyllium.  Another thing that seems to have made a difference (and I don't understand why) is a detox foot soak with hydrogen peroxide and warm water. 

Starting out, Steve was on Questran (double-dose with olive oil in the middle of the night).  When he would go foggy during the day, he popped a couple of glucose tablets, and he had a couple before meals too.  Wow!  What a difference the glucose made!  Then his urine went foamy, and he tried switching to charcoal in the middle of the night instead of the Questran.  That seems to have been a good move.  He takes one 25mg Benadryl tablet at the end of his workday if his eyes feel sandy (one of his best endotoxini indicators).  The past two days have been good ones with increased energy and a very clear head, and he hasn't needed the glucose.  If things seem to decline from here, we'll switch back to the Questran and just keep switching back and forth as needed and using glucose as needed.

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~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. 

Daisy,  As impatient as

Daisy,  As impatient as Steve and I both are to get on with the next leg of his treatment, we have to pay attention to something Louise mentioned.  Steve has to be able to work.  Our lives are structured on that...the finances, the insurance, his sanity.  If nothing else, that will keep us from doing anything too radical.

I may need you and everyone else here more than ever in a few weeks.  Thank you all for being there.  My head is much more peaceful now.

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~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 - At times, I know I

Joyce -

At times, I know I have had to swallow a big ole lump of fear and give my husband what seems like a lot of stuff at once - terrified and justifiably so of what might happen. 

So completely understand where you are coming from and why it's hard to consider giving Steve 14 to 30 days of Flagyli plus Diflucan.    You have to manage the fall out (endotoxini/porphyriai) Plus work and live.  Wise (as always) to carefully consider this decision !

Plus your decisions are made more difficult by the differing opinion of two doctors , doctors who themselves, have differing degrees of experience, different paradigms and probably differing degrees of success in treating "MS" patients.  

For me - reading and re-reading Karl and Lexy's blog's has provided tremendous comfort ... in going forward with a more aggressive treatment plan.

In our unique situation and with hindsight, given that my husband has been on high doses of Rifampin, Diflucan  (he is on round 3 now), Roxyi , Minoi , Bactrim DS BIDi, Mepron, etc... 

and on all of them all at once

and endured a very scarey porphyia attack,

the only three regrets that I personally have are

1) Wish I had gotten on top of the lyme co-infection quicker and hadn't trusted the negative Elisa.

2) Wish we had done the jumbo combo of agents sooner

3) Wish we hadn't putzed (that's the nice word I'll use) around with Yaema Chlorella for antiporphyria and had given the Questran daily a long time ago. 

With the Questran, believe we wouldn't have endured the severe porphyria attack and the past few months would have been more a reliable upswing than so nerve biting of a trajectory.

I have great faith that you will make the right decision!  You have great instincts on what's right for your situation!   

 It's good you have choices and options! All of them good.  Seems to me you increase your odds of improving Steve's health which ever way you go ! 

Daisy - Husband on CAPi 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyl, Mino

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. 

hmmm, preCAP, the theory for

hmmm, preCAP, the theory for my horrendous gut pains from my chin to my knees, accompanied with numbness & tingling in my knees last year at the end of March 07 was a "bacterial" infection.  Doc gave me flagyli for about 8 weeks & it sure didn't have the effect it now has with the Azith & Doxyi!  BAMMM!

Sounds like a crap shoot for your Steve.  You will make the right choice & you can always adjust doseages I suppose.  I thought the CAP would treat both the CPni & Lymes well over time?

congrats for the wedding trip, that will be nice to see parents again!

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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, Thanks for thinking

Joyce, Thanks for thinking out loud and sharing some information regarding Lyme cystic form and the recommendations made to you about longer pulses being needed for cystic lyme.  Which I have likely been forcing these past months on doxyi and roxi.   I am considering a 14 day pulse the next go round.  I will be pondering it.  Even with my fevers my pulses have been doable, and of course I do not have any obvious neuroi symptoms so that would be a cosideration for those with that dxi.

I have been on hold with pulses for several months due to the liver ezyme issue.  Today I reread the insert from some doxy tablets that I ordered.  Did not see it earier but doxy sometimes has unexplained SGOT and SGPT elevations.  So it is the doxy or me and the Roxi did not add to that rise.  Complete Hep panels showed no virals there so that is wonderful.  Just have been resting my liver.  Will tolerate the moderate elevations that are falling and get on with pulse.

I think that over the past 11 months I have winnowed down my CPni load over time and consisent treatment. 

I am learning a lot from the management of both Steve's and Daisy's husbands treatment that is valuable to me.  Thanks for sharing with us.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

Jim,  It scares the hell

Jim,  It scares the hell out of me too, thus the quandary and the busy head.  Dr. LLMD and Dr. X are supposed to collaborate on this with Dr. LLMD recommending the fluconazole course and Dr. X prescribing it, since we won't be seeing Dr. LLMD again until July (the 5 month stretch is outside Dr. LLMD's comfort zone).  Dr. X is not wild about the idea of a long fluconazole course, because he fears creating resistant fungal superbugs where there are such limited choices of anti-fungal meds.  That ship may have already sailed with regard to fluconazole (and Nystatin).  However, he assured me that, if that's what I want, he'll do it.  Dr. LLMD has used the fluconazole treatment on at least 200 Lyme patients.  There are at least a few Cpnhelp.org site users who have undergone the fluconazole Lyme treatment, and now we know that at least two of them experienced severe porphyriai with it.  Steve will do the fluconazole course, and we'll be faithful to the anti-porphyric measures.  You and Louise have about convinced me that trying to include flagyli in this scheme is really over to top.  If all goes according to plan, the fluconazole should start in 11 or 12 days.  Thanks everyone for the terrific help..

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

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, could you help me

Joyce, could you help me figure out who the other person was who had a severe porphyriai attack on fluconazole besides me? 

I thought I was alone and would love to compare notes with someone! 

Best wishes in Steve's adventure.  I'll be very interested to hear how he progresses. 

Thanks,

Marysia 

 

CDC Lyme + 02/06; Cpni, HHV6, and EBVi + 03/08. 2 yrs slow improvement on variations of CAPi for Lyme. Currently slowly resuming treatment and changing to newly discovered (for me) Cpn protocol after a severe porphyria attack 09/07 on Diflucan.

Marysia,  Sure....Daisy's

Marysia,  Sure....Daisy's husband.  However, that's a clouded picture where there were other elements at work.  Daisy would have the best opinion of whether her husband's porphyriai attack could be attributed to the fluconazole, some other element, or to the powerful combination of elements at work in him at the time.  Thinking of what happened to you as well as to Daisy's husband, that's mysterious to ponder if you assume that aggravation of Cpni-caused porphyria is to blame.  It makes you wonder if the fluconazole might also have some effect against Cpn.  Were you taking any antibiotics at the time?  If fluconazole acts to slow or shut down efflux pumps, that would help to explain Daisy's husband's porphyria, though the antibiotics alone could have aggravated his porphyria even without the help of a pump inhibitor.  Please let us know if you were taking any abxi at the time.  If my ponderings are straying off into left field, someone please straighten me out.  Thanks,

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

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. 

Thanks, Joyce, I didn't

Thanks, Joyce, I didn't realize Daisy's husband had porphyriai from fluconazole as well. I was on fluconazole by itself with no other antibioticsi, and very few supplementsi (just probiotics, daily multivitamin, possibly resveratrol occasionally).

My LLMD recommended stopping my other antibiotics two weeks before going on the fluconazole. We were trying to see if yeast was clouding the picture of my Lyme symptoms. I was supposed to stay on it for a month but only made it to 24 days.

I was pretty miserable the whole time on it, but about 4 days before the attack I made the decision to stop giving in to my extreme carb cravings and cut way back on carbs and sugars to really starve the yeast. At the same time, one of our beloved pets got sick and died.

So, now I believe that the fluconazole likely caused herxing from die-off (of yeast and possibly Borellia cysts) as well as porphyria (by blocking the CP-450 pathway in my liver). The quick curbing of dietary carbs and the added stress of grief really compounded my porphyria and brought on the attack with exacerbated psych symptoms and partial limb paralysis.

I'm considering trying fluconazole again eventually as a once a week maintenance dose to try to stave off yeast. I'll only try that once I'm well into the CAPi for Cpni, though.

I hope you find a good path for Steve.  Keep us posted!

Best,

Marysia 

 

CDC Lyme + 02/06; Cpn, HHV6, and EBVi + 03/08. 2 yrs slow improvement on variations of CAP for Lyme. Currently slowly resuming treatment and changing to newly discovered (for me) Cpn protocol after a severe porphyria attack 09/07 on Diflucan.

Marysia,  Before you

Marysia,  Before you consider taking fluconazole once a week for yeast control, I would discuss it with your doctor to make sure you wouldn't be making your yeast resistant to fluconazole by taking it that way.  My heart goes out to you for the frustrations you've had with your treatment; I hope the path is made straight for you very soon.  I'm so sorry for the loss of your beloved pet.  I still weep sometimes for my Winnie whom I lost 13 years ago.

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~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- don't know whether

 Joyce- don't know whether I'm muddying up the waters, but I have some concern about these long courses of diflucan in terms of the P450 enzymes and the impact on porphyriai and other things. I wouldn't want to add flagyli to that mix and load the liver more as well as confuse the reactions one with another. My two cents.

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

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

Joyce, Please let us know

Joyce, Please let us know what you folks decide to do about this treatment situation.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

Thanks gals...interesting

Thanks gals...interesting comments.  I have to admit, like Daisy, until lately, I was certain Steve didn't have any porphyriai to speak of.  Last Spring when he began to have real problems, I eventually attributed them to Candida.  I now think his problems were more complex than that---Candida+Lyme neurotoxins+some porphyria.  We didn't know he had Lyme at the time; that's another thing I had felt pretty certain he didn't have.  Amazing how you can be so wrong when you're trying to be so right.  He has taken charcoal in the middle of the night from the beginning on the CAPi.  Last Spring we tried alot of glucose and D-ribose but gave those up in the interest of Candida control.  That whole scene will always be fuzzy.  A couple of courses of fluconazole helped for limited periods, then his condition fell off badly again.  That could have been temporary improvement of the Candida or Lyme kill-off followed by die-off reactions...or both.  Throw in some probable inadequately addressed porphyria. 

In any case, he now takes a double dose of Questran in the middle of the night which was started in an effort to control Lyme neurotoxins and Cpni endotoxinsi.  Now it is given for the additional purpose of porphyria prevention.  Over dinner, I just worked out a schedule that will allow him to take another double dose of Questran in the middle of the day.  I feel skittish about using glucose very much, because, at long last, the Candida seems to be under control.  When and if the need arises, though, he'll get as much glucose as he needs.

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

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 am interested in

Joyce,

I am interested in you situation as I am also CPni and Bb dxi.

Your statement;

To complicate matters, last week he used calcium pyruvate for a few days.  The aftermath of the combination of CP with azithromycini< for that short time is playing out rather like a type of pulse.  What does that tell us about the demographics of Steve's bug population?  And what does the mild fallout of Steve's last pulse tell us?  Cpn RB vs. cryptic and/or Lyme spirochetal vs. cystic?  Which freakin' bugs are telling us whatever they're telling us?  This feels like trying to play chess and backgammon at the same time.

Can you look back at the specific symptoms in relation to the list of porphoria symptoms list (long list) and the die off symptoms (LSP entotoxins and from Bb) to see the patterns?  

Also you have been pulsing with flagyli for some time now?  May be easier for Steve to work with the trial on the new med and hold the Flagyl pulse until you are familiar with the efects of it.   

Also we have the time and the summer activities are important!  Keeping on working is important.  Just my two cents hereWink.

Looking forward to following this thread.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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
  • <

Joyce, Diflucan may be a

Joyce, Diflucan may be a good choice for the reasons Daisy describes, though if Steve has issues with porphyriai I would be cautious about it and do all the anti-porphyric measures you can.

I have Lyme, too, and only made it to day 24 on Diflucan before I had a severe attack of porphyria symptoms that I have been very slow to recover from (still recovering 7 months later).

That being said, I did not take any anti-porphyric measures as I didn't know about it then. Since I've started taking glucose, cimetidine, and Cholestyramine over the past few weeks, the remaining nervous system damage already seems better.

Hope whichever course you choose has great results.

Best,

Marysia

 

CDC Lyme + 02/06; Cpni, HHV6, and EBVi + 03/08. 2 yrs slow improvement on variations of CAPi for Lyme. Currently slowly resuming treatment and changing to newly discovered (for me) Cpn protocol after a severe porphyria attack 09/07 on Diflucan with lasting nerve and nervous system damage.

A lot going on - I too have

A lot going on - I too have had busy head syndrome all week. I can't seem to get anything done. If you plow ahead April, May and part of June (don't think you will have time for 30 days of flagyli but maybe extended )- he should have time to recover by wedding. At what dose of flagyl did the Lyme doctor recommend for an extended pulse? What did the CP cause? Just curious as I tried it as well. Dr. X is great, yes responsibility scary but if you ran into trouble he seems like the type to get you out. These treatments are like chess and back gammon - I have recently lost both games! We decided to skip soccer - its rainy and freezing here - bad soccer mom! On Wheldon protocol for MS since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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.

wiggy,  The first day with

wiggy,  The first day with zithi, he went sleepy for several hours.  The 2nd day w/out zith, he was more energetic/less sleepy than in months. 3rd day w/zith, just like 1st day.  4th day not so energetic; in fact extra fatigue set in for a few days.  This week, his condition seems to reflect a wave of apoptosisi w/a dip in function and some restless legs.

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~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. 

Wiggers,  Sorry, I forgot

Wiggers,  Sorry, I forgot about the flagyli dosage question.  It hasn't been discussed yet, but I had planned to discuss it beforehand.  What happened with you on the CP/zithi combo and then on the in-between days?

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~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 - Given what I know

 Joyce -

Given what I know about Steve's situation - my vote would be for 50 days of Diflucan.

Rationale:

1) It is theorized to potentiate the Zithromax as a pginhib.

2) It seems antedotally and in one small study to be very effective against lyme.

3) Fall out from Diflucan for my husband was reasonable and seemed to bring about clarity and better function almost immediately.  Karl reports same.

4) Diflucan can be immunomodulatory - always a bonus.

5) 50 days will go along way towards the yeast beast you suspect and you will get a real feel for how much of an issue candida really is for Steve, if truly at all - ie you'll really know.

6) CPNi won't be growing because of other agents. 

7) It's fairly convenient to take.

You have a good quandary.  Choices are good - you will likely win either way!

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

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. 

Thanks Daisy,  What's your

Thanks Daisy,  What's your opinion about a concurrent flagyli pulse?  How long? With or without CP?  Since this is a very person-particular situation, I would be grateful for a PM if you don't feel comfortable being more specific in public.  If you do feel comfortable, let'er rip!  Any greenhorns should recognize that this is not general fare. 

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~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.