Hi all ~ I'm just trying to see how this works right now.
I've had ME/CFSi since 1991. I learned about the possible connection between CPni and ME/CFS from an article posted on the ImmuneSupport website. I brought it up with my CFS doctor, and he had me tested (antibodies, I believe). The test was positive. He started me on Cipro, 750 mg 2 x per day on June 6, 2007. I read more here and asked him about the NAC. He thought it would be a good supplement, so I added that in July 2007 at 600 mg 2 x per day.
So far, I'm tolerating everything well as far as side effects are concerned, but I am noticing a higher level of the ME/CFS symptoms with the NAC and the Cipro. Actually, I stopped the Cipro for two weeks after taking it for only three weeks, because I was going to vacation at the beach, and there is a possibility of sun sensitive reaction with the Cipro. I felt better during those two weeks than I had for at least a year. After the vacation, when I went back on the Cipro, was when I added the NAC. Things have been pretty miserable since then.
I'm taking another vacation next week, and I want to take a break from the Cipro again just to see whether I feel better again. If so, I'll believe that it's really doing me some good. I'm not sure whether or not I should take a vacation from the NAC as well. Any opinions?
I do plan to ask my doctor to look over the CAPi's described here and to consider changing my treatment. I'm trying to get all the necessary information together to send to both my PCP and my CFS doctor, in fact, before I talk to either of them. I'm also trying to get them to communicate with each other. That's easier said than done for some reason.
Thank you for this site!
~ Finch
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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 Doxyii 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, You are doing as
Hi Finch,
You are doing as expected with the higher level of ME/Cfsi symptoms that is confirmation enough that the bacteria that is living and reproducing and draining your cellular energy from your cells are being adversely affected by the treatment.
I can say from several Lyme support groups that I have attended, that it is a pattern for some folks to go on and off antibiotics, precisely for the reason that you mention they feel better after a short course of the drug and want to feel better of course but...
Also Cipro as you may have read here has some potential side effects used as a longer term antibiotic. Search the site and see what you find about that.
About my PCP Primary care provider and the CFS doctor communicating, I provide lab results back and forth to keep them both abreast of the other. However,I do not need them to talk directly, I prefer to be the go between. Keeps the PCP not responsible for the "out of the box" treatment regimen, knowing about it but not responsible for it. For me that is the best of both worlds. If I had listened to the PCP when he saw my photo sensitivity rash that I had on my hands and forarms from driving while the the windows closed and air conditioner on, I would have stopped the doxyi within the first three weeks of treatment. The rash is now gone, it has not happened since, Iam more careful now and if it was as a result of secondary porphoria because of the overwhelming early die off, my rate of die off is slower now. Each of these providers has their place in my care and I value that place for what it is. Ultimately, I am the captain of my ship. Just my two cents
Iwill be interested to hear what others say about stopping your meds or continuing your NACi without the Abxi. Sun Block with high ratings do work and light weight long sleeve shirts and pants I have found to deal with the sun.
Louise
Maine, USA CFS/Fibro CPni, Bb, 6/07 Doxy 200mg BID & NAC now up to 2400mg/day.
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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
Since you asked for
Since you asked for opinions, here's mine. I think it is foolhardy to stop and start antibioticsi for the sake of convenience of multiple vacations. Do you really want to get better or do you plan to later point at antibiotics as something you dabbled in and dismissed, because 'it didn't help me'???? I know it sounds harsh, but this is nothing to be cavalier about.
You need to make a commitment to the protocol and to your future. In the past 23 months, I have been frequently inconvenienced by the protocol and the most accommodation I've made is to delay a flagyli pulse a few days because of holidays. I;m being inconvenienced tomorrow, as I'm going to a favorite restaurant and can't have a glass of wine, due to being on a pulse. Oh, well. I have the rest of my FAR HEALTHIER life to have a glass of wine. Right now, I have to be cured of this disease!
Slather on some spf 60 sunscreen and stay on your meds. Do you really want to risk developing a strain of cpni inside you that can't be killed by the meds you are so nonchalantly stopping and starting? As for stopping NACi... why on earth would you?
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
Finch, Mac's message is
Finch, Mac's message is sound, and she knows what she is talking about. If you can get your doctor to look over the protocol and embrace it you are on to a winner, as Louise mentions Cipro has some nasty side effects if taken long term, so would not recommend that as part of a long term protocol, and we are talking long term here... months and years rather than days and weeks.
The reason we take two bacteriostatic antibiotics constantly is to stop bacterial resistance to the ABXi. The worst case scenario in terms of resistance is one antibiotic taken intermittently. So stopping and starting is not good. As Mac says its a question of priority, maybe you are not yet sick enough to know what you want from life. The alternative for us is a pleasant life now with an uncertain future or a uncomfortable few months with a long and pleasant future ahead.
This bug is not like most bacteria that succumb to ABXi in a matter of days, think of it more as similar to tuberculosis that take a long time to cure.
I'm not a medical person but I speak from experience, mine and others who have shared their stories on this website and also from having read the excellent (if copious) material in the handbook. Take your time, keep taking the NACi, go and see your doctor and try getting two antibiotics going.
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi 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
Hello Finch, Add me to the
Hello Finch, Add me to the list of those who would welcome you, slap the silliness out of you, and then show you the way. This is a "paying" job, and you can't miss showing up for work without serious consequences. We're here to roust you out of bed and push you out the door when you feel like skipping out for fun or for un-fun.
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.