I heard back from the letter I'd sent my CFSi doctor, in which I'd outlined the Wheldon protocol and asked if he'd consider supervising me with it. One of the nurses called me on September 17. She told me the doctor agreed with the antibioticsi, and they'd be calling in prescriptions for doxycycline and azithromycin.
She also said they'd be calling in a prescription for Noxafil, which is an antifungal. I was totally unfamiliar with the Noxafil. She said it's a liquid antifungal that has been very helpful for some of their patients. Apparently, the doctor feels I still have a big problem with candida overgrowth. This was something we'd treated pretty aggressively all through the past winter. I really felt that I'd gotten it under control lately, though, by using the probiotics and an Anti-Yeast supplement that I'd received through the Fibro and Fatigue Centers (FFC). At the time I wrote the letter, I mentioned that I'd been out of the Anti-Yeast supplement for a few weeks and had been waiting for it to become available again, because it had been out of stock. I did indicate in the letter that I wasn't sure whether some of the problems I was having were from the candida, so I guess the doctor decided I was having a candida problem after reading the list of symptoms I had also provided.
I picked up the prescriptions the next day. The doxycycline is 100mg - take one capsule daily for 30 days, then take one capsule twice a day. This seemed to be appropriate to the CAP. The azithromycin, however, instructed me to take 250 mg - 1 tablet three times a day. I emailed the doctor and told him this and said that I supposed it really should have read three times a week as indicated in the CAP and that would be how I'd be taking it. I also told him I would be starting with the doxy and adding the azith after a week or two.
The shocker was with the antifungal - the Noxafil. The instructions are to take 1 teaspoonful three times a day with a full meal. The first problem was a warning label reading "may cause headache." Since I have a headache of one sort or another most of the time, and I've been having lots of migraines lately, that didn't sound good. Then I got to the side effects. "Nausea, vomiting, diarrhea, headache, abdominal pain, dizziness, trouble sleeping, or stomach upset may occur." Since I already have headaches and trouble sleeping, I didn't think I needed any more of that. Then I got to the "unlikely but serious side effects." The first three are "signs of infection (e.g., fever, persistent sore throat), unusual tiredness, weakness." Okay - I have ME/CFS. I have a persistent sore throat, unusual tiredness, and weakness. How do I know if I'm having a serious side effect? The final straw was a warning against taking Noxafil with other drugs that can cause QTc prolongation (not sure exactly what it is, but it has to do with the heart). Azithromycin may cause QTc prolongation.
So I emailed the doctor with this question as to whether I really needed to take the Noxafil. I don't feel as though I have a candida overgrowth problem at this time. There's no white coating on my tongue or white discharge from my tonsils like I used to have. This medication was very expensive (for my prescription plan, not for me). I feel bad that I got it filled and probably won't use it.
I emailed the doctor late Wednesday night and have yet to hear anything back from him. I sent a list of supplementsi I was looking into getting - the supplementsi that are recommended by Dr. Wheldon. I had researched everything and found out where I wanted to order them (not from FFC). I asked him for comments or suggestions. Since I haven't heard back from him, I went ahead and ordered everything. I think it's very important for me to get started on the supplements, and I don't want to wait any longer.
When I first saw this doctor, he had put me on many supplements, but he gradually took them away from me even though I didn't have any real improvement. In the letter I sent him, I asked him about that, but he didn't respond to that question.
Well now, this blog was supposed to be about me finally getting started on an actual CAP, but it did turn into something of a rant, didn't it? I am glad that I've got the antibiotics going correctly now, anyway. I do feel a little bit better than I did when I wrote my last post. Mostly, slightly more energy, and not as much of a toxic feeling. I hope I'm getting some of the endotoxinsi cleared that I had built up with the heavy dose of Cipro. Now I should be on a gentler path.
I'm also looking for activated charcoal but haven't been able to find it. I'd like to be able to pick it up at a retail store if possible, but I haven't found it in two pharmacies I checked or at the grocery store. Any suggestions?
Finch - Western PA USA
ME/CFS since 1991 - CPni diagnosed June 07 - began Cipro 760 mg 2x per day - added NAC 600 mg 2x per day July 07 - Stopped Cipro and began Doxy 100mg 1x per day on 9/18/07
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Finch - Western PA USA
ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc
Hi Finch, Activated Charcoal
Hi Finch, Activated Charcoal the brand that I have is Nature's Way from my local health food store. Website info on the bottle www.naturesway.com and phone number in USA 1-800-9nature.
Louise, CPni, Bb (Lyme Borrelia), CAPi started 6/24/07 Doxyi and NAC
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Louise CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
Walmart will order for you.
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAP 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 46 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
Rica, Do you recall the
Rica, Do you recall the specifics, meaning the number of capsules, the mg per capsule and the price?
Thanks for the suggestion. I would like to comparative shop.
Louise
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Louise CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
The price was about $12 a
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAP 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 46 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 Rica, the price seems
Thanks Rica, the price seems in the same ball park for the about the same number and dosage. I think that your middle of the night dosing might be helpful in getting in another dose which I am finding a challenge.
Louise, CFSi, CPNi, Bb, Capi June 24, 2007 Doxyi and NACi.
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Louise CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support
Yay, Finch! The
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
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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
Sorry Finch for hi-jacking
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 46 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
No problem, Rica. I'm glad
No problem, Rica. I'm glad to get the info on how to get the charcoal tablets. Do you just ask Wal-Mart to order them at the pharmacy counter, then? I also might try to check out some health food stores. I'd thought of that but didn't know if that would be the place.
Thank you all for the information and the encouragement!
Finch - Western PA USA
ME/CFSi since 1991 - CPni diagnosed June 07 - began Cipro 760 mg 2x per day - added NACi 600 mg 2x per day July 07 - Stopped Cipro and began Doxyi 100mg 1x per day on 9/18/07
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Finch - Western PA USA
ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc
Well done Finch, you have
Well done Finch, you have managed to convince your doctor... Hope it all progresses well from now on. Your eperience with the AZI is a reminder to all of us to be vigilant with our treatment and not expect doctors to know what it right for us.
Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, EDSSi was 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
Thank you, Michele! Can
Thank you, Michele! Can you imagine what might have happened if I'd not had the information from this site and had gone ahead and used 250mg of Azithromycin 3 times per day along with the doxyi? I don't know whether it was the doctor or the pharmacist who made the error. I mentioned it to the doctor in my email, but I haven't heard back from him. I plan to try emailing him again tonight.
Finch - Western PA USA
ME/CFSi since 1991 - CPni diagnosed June 07 - began Cipro 760 mg 2x per day - added NACi 600 mg 2x per day July 07 - Stopped Cipro and began Doxy 100mg 1x per day on 9/18/07
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Finch - Western PA USA
ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc
Officially welcomed to the
Officially welcomed to the MAD CAPpers Finch!!
Good Job!. I have a doc at the FFC in WA. I think they might have to talk about us rebels as I forwarded this site to her. My doc in AB prescibes me.
About the Candida, there are all kinds of more gentle natural products. We all have issues with yeast. I did a yeast cleanse back in Feb & I take about 8 acidophyllus capsules a day. Also I have read that Pau d'arco is good for yeast as well. It is an extract I put in water to drink.
Best wishes for the best possible outcome.
peace
Ruth
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, 8-21-07 1st pulse 1 X 250 mg Metroi
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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 11-1-08Okay, we do not ALL have
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
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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
Hey MacK, I venture to say
Hey MacK, I venture to say MOST of us have problems with yeast as the antibioticsi mess the good flora in our guts. I am constantly doing a tap dance with it.
Prior to starting the CAPi I had been on antibiotics & of course, it ruins the good flora. This explains the sweet tooth I have had most of my adult life. I can actually say, with the help of the acidophyllis (8 caps a day) there are moments when I don't crave sugar.
Anyway, Candida is alot more prevalent that we would like & it has some serious ramifications in the body.
Peace
Ruth
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, 8-21-07 1st pulse 1 X 250 mg Metroi
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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 11-1-08