Some of you have noticed that my presence on the site has been very thin lately. I work full-time, my workload has increased 3-fold, and my major CAPi die-off symptom is fatigue. The main reason for my silence and scarcity, though, is that I have been spending most of my limited internet time investigating anything and everything to help Steve. He has been having a rough time of it for months now, and this episode-in-progress should be told.
For the benefit of newbies, I should first tell you that in April '06, Steve had just finished a year of Rebif and was preparing for the CAP by getting some minor medical matters out of the way. Prior to having a lipoma removed from his back, he had some imaging that revealed several of what were described as "cysts" in his liver, pancreas, spleen, and kidneys. The scans have been repeated every 6 months since then, and a new lesion appeared this past June.
In July '06, Steve started taking oil of oregano and had such strong reactions, we had to stop it after 2 weeks. In early August '06 he took a week long course of fluconazole, and then, finally started the CAP. The point of this chronological recount is to make it clear that Steve had a problem with candida before he ever started the CAP.
This is an excerpt from a letter I sent Steve's doctor last week:
"Since we saw you last, Steve has taken two courses of fluconazole. The first brought overnight improvement, but it only lasted several days. The second course didn’t faze the yeast overgrowth problem at all. Kolorex (horopito) helped quite a bit, but the help it brought soon faded from its initial level of improvement. He is currently using Candex, which has also improved the problem some, but not enough. Plus, he’s downing gobs of probiotic bacteria and S. boulardii. This week, he will start the Whole Approach protocol. I believe Steve has had yeast overgrowth problems from infancy, and it’s going to take a long-term treatment to control it.
Steve’s condition has been creeping the wrong direction since Spring. His cognitive function has declined, he is very fatigued most of the time, his foot dragging is worse, the swallowing/strangling/coughing problems have returned, he has developed tremors in both hands, his upper body strength has continued to decline, his feet and legs have become restless again, his balance is still poor, his bladder control has worsened, and he has become very discouraged, depressed, irritable, and uncooperative at times. He has not had a flagyli pulse since early May, because he has not been in the right condition for it. That’s a huge disappointment, because the flagyl pulses have given Steve the most clearly demonstrable improvements he’s enjoyed since starting comprehensive treatment. We are both anxious to resume his pulse schedule, but other issues need sorting out first.
As I said earlier, I believe Steve has had candida overgrowth his whole life---plenty of time and opportunity to contribute to his problems, and plenty of opportunity to escape through a leaky gut. My concern is that his candidiasis might be systemic. Specifically, I’m concerned that the cysts/lesions that showed up on imaging of his internal organs in April of last year might be abcesses caused by candida or some other fungus. A new one showed up in his liver in June of this year. Systemic infection could be the reason his candidiasis has been so refractory to oral treatments."
It takes 3 to 4 months to get an appointment with our doctor, but Steve was given an appointment on Halloween. Dr. X not only agrees about the cysts/lesions being fungal abcesses, he believes Steve has a resistant form of candida, a sort of fungal equivalent to the bacterial MRSA. Tonight, Steve started a 10-day course of an anti-fungal called Vfend that is supposed to be effective at killing resistant candida. Dr. X also advised to resume the flagyl pulses anytime, so we slipped in a 3-dose flagyl pulse that started last night and ended this afternoon. Since it's been 6 months since his last one, there has been ample opportunity for a significant RB to cryptic Cpni population shift, so we're being conservative on re-starting the pulses. During the appointment, Steve was given a steroid injection, so there will be no clear picture of pulse die-off reactions or of fungal die-off reactions. I don't care about how clear the picture is. Steve is in bad shape and needs the inflammationi calming effect of the steroid due to the runaway candida problem and to give him an easier time of it for the pulse and the candida killing. Hopefully, this will be the last time he has to have steroids, because it can also make a candida problem worse.
Not realizing this problem existed, there were some things I did that surely worsened it. One of those things was giving him D-ribose to help his fatigue. It did help the fatigue, but after all, it is a sugar...the last thing someone with a serious yeast infection needs.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSii). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVii, CMV & other herpes family viral infectionsii, elevated heavy metals, gluten+casein sensitivity.
Joyce, so sorry to hear that
Joyce, so sorry to hear that Steve's problems are so recalcitrant. Candida is such a difficult thinkg to keep at bay and if Jim has had it since childhood it is going to be a long treatment. I'm pleased you are getting such good treatment from your doctor who obviously understands all the problems and is willing to listen to his patients.
Don't give yourself a hard time about the D-ribose, even doctors find it difficult to cover all angles, but I presume he is on a yeast free diet. Is he still managing to work?
It took Ella a year to be able to do a full pulse and we had stops and starts of several months after trying very small pulses. As you know it took her a full year of treatment to be able to tolerate pulses that did not bring on deficits and she seems fairly free of candida.
Even if you are invisible through pressure of work, we are thinking about you both.
Hugs
Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Thanks for the words of
Thanks for the words of comfort Michele. This morning Steve is already better, an overnight improvement just as he experienced before after taking fluconazole. I figure the fluconazole courses killed the non-resistant candida before and the resistant form quickly moved in to fill their vacated spots at those times. The proof will be in the pudding---will this be a lasting improvement unlike those prior times? God, please let it be so. This has the potential to become life-threatening if it's not squelched.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, antivirals, heavy metals chelation, LDNi, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGi/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.
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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, Joyce, I never realized
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Hi Joyce, My father is a
Hi Joyce,
My father is a doctor in usa .He owned allergy labs and was very specialized in yeast problems even years ago. He also had the patients completely change their diets no carbs/sugars When taking diflucon it was for a fairly extended time to completely clear it. Also he would exnchange with Nystatin 3 weeks on 1 week off. Got to watch the liver though the NACi should help with that. Yeast is a pain I had it but no longer good luck but you have to make sure he is taking diflucon/nizoral/nystatin etc for long enough or it grows back. My father also had alergy shots for yeast called T.O.E(abrevaition for different mold varieties) which worked better than anything. CHeck into your allergist for that. Barbara
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NACi and glutathione push for years all supplementsi in protocol)IV vitaminsi b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008
Good Job Joyce, Steve is in
Good Job Joyce, Steve is in great hands.
I had read somewhere that candida is more serious than we have thought in the past. This has become obvious in Jim's case.
Overnight improvement is the greatest news!
Onward & upward, you both are in my prayers.
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, 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 11-1-08Hi Joyce, Great news!
Hi Joyce,
Great news! Let's hope for that lasting improvement too. Hang in there...
On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
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Treatment for Rosaceai
I have a huge respect for
I have a huge respect for the care givers. They do an awesome job in addition to taking care of themselves.
Hang in there friend
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, 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 11-1-08Joyce, You have been missed
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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. Ma
Joyce, my salutes are there
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 47 pulses NC USA
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA
Thanks everyone. Steve is
Thanks everyone. Steve is really enjoying feeling so much better. In fact, it's causing some friction between us. His head is full of doing all kinds of things that he wants me to do with him, his energy level is up, and I'm completely worn out. On the trip back from his doctor's appointment on Halloween, I began to relax. My guts had been so tensed, they began to hurt as I relaxed. Right now, I'm frazzled and about as inert as a sack of potatoes, too exhausted to enjoy Steve's improvement with him. We just had a nasty blow-up when he came to badger me about being on the internet as I was PMing a friend. He wants to get out and do things after such a long time of feeling too bad and tired and having no ideas in his head to do anything. Thankfully, we made peace right away. He complained that life has to go on and didn't afford time for the internet. I explained that my internet time is his life-line and how little of it I have these days, told him I wasn't a machine and needed some time to recover from his crisis. So now, our understanding is that I can respond to my cpnhelp buddies this afternooon, and he's getting out of the house to do whatever comes to mind. He's a "Boy Scout." He'll go to Mass and to Whole Foods.
The upside of our argument is that it wouldn't have happened if things weren't going right for a change. I appreciate everyone's pats on the back for my caregiving efforts. It's hard and lonely, but thank God the framework of my life as a caregiver is one that involves hope and a focus on remedial endeavors instead of just taking care of him until he's faded away.
Michele, Steve has not missed any work, but it's only by the grace of God that he still has a job. His cognitive function has been slipping badly. Fog, fog, fog and deep exhaustion.
Barbara, If it appears that the Vfend is not going to have a lasting effect, I won't drag my feet in pushing aggressively for an extended treatment of the type you described. Steve has been on a sugar-free, limited starch, gluten-free/casein-free diet for a good while now. He finished his second course of chelation about 5 weeks ago, a pro-candida factor. Also, I gave him "the zinc taste test" several days ago which indicated that he is severely zinc deficient. Zinc deficiency is another pro-candida factor. I spoke with his doctor about the Pfeiffer Protocol for metallothionein promotion which includes a careful zinc-loading phase, but the doctor thinks that Steve is not a good candidate for it, because there is good reason to believe that Steve's metallothionein imbalance problems are genetic. Nonetheless, he recommended that Steve begin slowly titering-up on zinc picolinate after 8 weeks have passed since the end of his chelation. That will be in about 3 weeks. Steve is receiving comprehensive treatments for MS. His doctor treats various elements that cause inflammationi in patients with chronic inflammatory illnesses, and allergies is a significant focus in his treatments, so Steve's covered on that front. Incidentally, I asked about allergy testing for Steve during this appointment, and the doctor advised that this was not the right time. I came away with the idea that right now Steve would be highly reactive in general. Thank you for your thoughtful comments. I'm sorry that I've been so absent that we haven't "met" before now.
Sarah, Ruth, Red, Rica, I've been missing all of you. Jim's name has come up twice in this thread, and I have to admit that I'm completely in the dark. That's how out of touch I've been. There are dozens and dozens of threads I haven't read. Jim is someone I respect, admire, and truly care about, and now I must find out what's going on with him.
Wiggy, Dr. X is calling this by the symptoms (fog, fatigue, visual disturbances, etc.), by the pattern of his responses to fluconazole and the anti-candida supplementsi, the chelation and zinc factors, by his lifelong history of symptoms, by the lesions on the imaging, and by his experiences with candidiasis in other patients. Sadly, he said that of all the types of chronic infectionsi he treats, bacterial, viral, fungal, and other, when someone has this problem, it's the toughest one to beat. By the way, from other comments during the appointment, I learned that he does have other patients on the CAPi. I extrapolated the fact that he is prescribing the CAP for other patients, his green light on resuming flagyli pulses, and the fact that he didn't want to stop the abxi as though the CAP were the culprit behind the yeast problem as a huge gold star for the CAP. I think many doctors would have yanked the abxi or might have thought Steve's symptoms meant that the CAP wasn't working. I feel very reassured once again to know Steve isn't receiving care from a shallow-thinking, timid, reactionary doc.
Steve (the other Steve), I hope you are reading this, because my post was especially for you. Please watch how this plays out.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.
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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.