Well, I think maybe in June, when I found out about the Cpni test results and got started on treatment, I got started all wrong. First of all, my titers were IgM at <1:16 (in range); IgGi 1:64 (high - reference range <1:32); IgA 1:32 (high - reference range <1:16). I don't know how this appears to people with medical knowledge, but both my doctors seemed quite convinced I was dealing with infection.
My CFSi doctor (the one at the FFC) was the one who had ordered the test for me, and he prescribed Cipro at 750mg 2x per day. He gave me a prescription with enough refills for 4 months, and that was it. Nothing else. He did say I should call a month later and ask about him adding Biaxin. When I visited my PCP, showed him the results, and told him about taking the Cipro, he asked, "for how many days?" I said, months, not days. He was rather taken aback. He told me he preferred Biaxin to treat Cpn, but that was about all he said. We left it at that.
After reading some more on this site and learning about the NAC, I emailed my CFS doctor and asked him about adding that. He agreed, but didn't have it available through his office, so I ordered some and began taking it as soon as I received it in early July. I had also asked him about dosage, and he said he didn't know about that, just whatever was recommended by the manufacturer, so I began using 600mg 2x per day.
In July, I contacted the CFS doctor about whether he would be adding the Biaxin, and he said that due to how I was already feeling lots of die-off effects from the Cipro and the NAC, he thought that adding the Biaxin might make me feel toxic and might compromise my immunei system.
So all I've been doing is taking the Cipro for 3 months and the NAC for two months, and I've been feeling really ill. I had been thinking that I had "NAC flu" for all this time, but in reading other people's posts, the NAC flu generally doesn't seem to last more than a month. I guess that leaves the Cipro.
Does this mean that the Cipro is doing a good job for me, or is it too much? I actually seem to be feeling worse by the week. I know that Cipro is not one of the antibioticsi used in the protocolsi described here, but here's my question, for anyone of more medical knowledge than myself. Could using Cipro constantly for three months be along the lines of using something like Flagyli on a continuous basis as far as actually killing off the Cpn? Could this be why I'm only feeling worse, and never better? Or is this just how it goes no matter what the antibiotic is?
I have written to both of my doctors and sent copies of the Wheldon protocol and the Stratton protocol as I found them from this site. It'll probably be a week or so before I hear back from either of them. I also stressed that the supplementsi are a very important part of the treatment and that hopefully my CFS doctor can help guide me with the supplementsi, as that's an area where he seems to be knowledgeable. I will get the supplements on my own if he is not helpful in that area, but I'm hoping he can help figure it out for me. With the way I'm feeling, all this is rather overwhelming right now, but I know I need to get on those supplements to help me deal with the effects of the antibiotic treatment. I am taking the NAC, a good probiotic, a supplement called Fibro Freedom, which contains some of the recommended supplements, and good mutli-vitamin.
The interesting part of all this is that the CFS doctor started me last October on a large amount of supplements, then pulled them away from me a few at a time at each of my visits, even though my condition was not improving. In my letter to him, I asked him what that was all about. I'll be interested in hear his response.
Maybe I should mention what my symptoms are to help determine whether they're coming from die-off. I'm extremely exhausted, and I feel as though there has been some kind of poison injected into every cell and fiber of my body. I have burning pain in my head, in my neck, in my shoulders, down my arms, in my eyes, in my mouth. I have a scratchy, sore throat. I feel as though I have a sinus infection. It also feels like I have some congestion in my upper chest, although my cough is dry. I have pain in an area where I had two root canals done more than a year ago. I have stiffness, I and I feel achy a lot of the time. I have pretty severe urinary tract pain. I have a lot of trouble with concentration, short-term memory, and paying attention. I've been having a lot of trouble with headache (pressure type) and migraines, although I've been having migraines for nearly 30 years now, so that's not new. I have post-exertional malaise and severe orthostatic intolerance. I can't stand for any amount of time at all. I can walk, but not at a pace that would sustain fitness. It has to be more of a stroll.
A lot of these symptoms are basic CFS symptoms, and I was having them before I started the Cipro. It just seems that they're worse now.
I'm hoping that I'll soon be able to switch to a recommended CAPi and that my doctor will be able to help me sort out how to get going with the supplements. I really want to do this right. I know doing it wrong can only make things worse.
Thanks for listening!
Finch - Western PA USA
ME/CFS since 1991 - CPn diagnosed June 07 - began Cipro 760 mg 2x per day - added NAC 600 mg 2x per day July 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 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
Finch- Just a guess, but
Finch- Just a guess, but from what you describe it sounds like the combo of NACi and Cipro is hitting your Cpni hard, and that you are getting an increased build up of the fat-soluble porphyrins as well. These tend to increase over time as they are reabsorbed from the gut and build up in tissues, unless you are clearing them some how. The suggestive indicators are that toxic, poisoned feeling, increased pain and aches, concentration and memory problems, headache.I'm pretty sure Cipro is a potent antichlamydial, although not recommended for the long term because of other side effects. This means that you may also be getting apoptosisi of cells like liver cells that make porphyriai worse.
It's also possible that the NAC can affect people for more than a month, especially if your EBi load has been high. You may need to talk to your doc about backing off on some of the meds, or see if increasing antiporphyria efforts has an impact.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 300mg INHi, 200 Doxycycline, 500mg MWF Azithromycin,
1000mg Tinii daily(Taking a break from continuous protocol)___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Well, everything 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.. I believe your being
Finch.. I believe your being Overdosed!
I am no doctor, but it appears you are experiencing EXACTLY what I was put through which TOTALLY set me back in getting started on this. My doctor gave me 500 mg of Levoquin -- I too got worse not better and this was before I knew about die off or had been tested for CPNi.
The way I described it was as if I was being slowly poisened. Each day my ability to move around got worse, my right knee swelled to the size of a baseball I can only describe it as a "slow death-type" of feeling. (of course, the dr. said it "couldn't" be the levoquin) until I brought in literature. I also believe my spleen was enlarged as it was so tender my side could not be touched (and it was not my liver) They did x-rays and found nothing. My poor spleen was trying to clear out my toxic overload.
I have done alot of research on Cipro and the fluroquinolines. My personal opinion is (from reading) it is a very powerful, broad spectrum antibiotic which the doc's are now tending to OVER prescribe..This is fact: Cipro was actually overmanufactured when we had the Anthrax scare... then the mfg's contract with the government didn't go through because they determined that Anthrax could be treated with a good ole antibiotic like penicillin!! (I have lost all of my links as my other computer crashed) HMMM so now guess what "drug" the pharm companies needed to push! Go figure, that was a few years ago, but the docs seemed to like it cause it "kills everything".
Many people suffer adverse affects from Cipro but the doc's pooh pooh their complaints and discount them as NOT being the cipro. I personally WOULD NOT want to take CIPRO long term.
Because of my being "overdosed" I had to totally abstain from antibioticsi for about 3 weeks to clear my body. During that time I religiously took my supplementsi and charcoal. I then tried Azith 1st but that was too MUCH, so I slowly built my doxyi first (100 mg/day) for a month.
Anyway, my personal experience appears similar to yours I would cut back the dosage -- obviously your body isn't handling it at the dose you are on. Please don't overdo it; be sure to take the NACi as well as the supplementsi and charcoal (that was another mistake I made). Sublingual B12 helped alot as did drinking gatorade
Educate (or try to) your doc on the fact that you need to take this SLOW. Is he planning on treating you long term? Or do the FFC centers think this will be gone in a few months?? Did you discuss the length of the treatment plan? REMEMBER the doc's are not God's -- you are here educating yourself, trust your gut instinct and the cull from the experiences of those here to help. Everyone here is with you!
The mantra's given to me by others on this site were: patience and persistencei; AND, this is not a race... it's a marathon! Go slow, it's frustrating but you have to pace your body!!
Be blessed and well, (and don't panic as I did
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Jeanne ~ Diagnosed w/ CPN 4/2007; also diagnosed w/ ME/CFIDSi/FM; also: HHV6, EBVi, IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. Bad Start on Azith.... so on 5/27/07 started Doxy 100 mg/day; 6/16/07 200 mg Doxy/day; 7/16/07 added Azith - 125 mg (half dose) MWF; supplements___________________________________________________________
JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupSounds to me as though you
Sounds to me as though you are hitting Cpni with a sledge hammer and are suffering the consequences. It is always difficult to tell the best way to go, we are all individuals with a different load of Cpn which has found a home in different parts of the body. So we usually recommend that you start slowly, and even build up the doses of the abxi gradually so you do not put your liver and other sytems under too much pressure, and give yourself a chance to gauge your reactions.
However, if you can take the pain and discomfort what you have done will probably be benficial in the long run. It may reduce the length of your treatment... Jim has explained all the medical stuff so I won't go over that again, he does it better than I would in any case...
In this instance, you are doing all the sensible, loical things to get the treatment you need. You are informing yourself and educating your doctors, in a couple of months time you will feel much more confident about what is happening...
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 6.5 Wheldon CAP 16th March 2006
Thank you, MacKintosh - I
Thank you, MacKintosh - I really think you're right. I wish I'd done more research before jumping into this. I actually had the test done on 5/10/07, and I didn't see the doctor until 6/4/07. Since I hadn't heard anything before seeing him, I had assumed the test results were going to be negative. He really threw me for a loop when he told me the results and prescribed the Cipro for me. I hadn't done my research, because it was unexpected.
That's also the reason why I've written to my doctors instead of scheduling appointments to see them to discuss these protocolsi. I'm not very good at the brain/mouth connection, especially when I'm in a fog. The doctors seem to all have had extensive courses in fast-talking. It's often hard to get a word in edgewise.
Also, the dose of 750mg Cipro twice a day is massive, I believe. My Mom recently had a bout of cellulitis and was prescribed 250mg Cipro twice a day, which cleared her infection quite quickly. 750mg twice a day for three months with no buildup or any supplement support is probably way too much, especially with me being a lightweight at only 118 pounds.
Hopefully, I'll be getting on the right track soon.
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
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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
Thanks, Jim. I hope my
Thanks, Jim. I hope my doctor gets the message through what I've sent. I included an extensive list of symptoms, and he should be able to recognize what's going on.
I'll be looking more into what I need to do to help with clearing the porphyrins. It does seem like that could be part of what's happening since i feel myself going downhill.
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
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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, as brain-fogged as
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
Wow, if I was you, I would
Wow, if I was you, I would be cutting my abxi dose back, purchase as many of the supplementsi as you can, iherb, American Nutrition, Puritan's choice are a few companys. The supplement list here tells exactly what everything is for & what they do. It is very important to get the cleansing porphyriai Charcoal, Vitamin C flushes, glucose etc. Your body needs the support from these supplementsi.
Jeanne is a good mentor as she too got the sledge hammer approach & was off to a less than desirable start. She is well on the mend & building up slowly now, we started about the same time. I believe Jeanne is from your neck of the woods & has a good doc now.
Being brain foggled is not fun & it still affects me. I understand that this makes things much harder for you to read. I read some of the stuff 4 - 5 times to try to get it to stick in the mush head. I am not the best at the technical science as a result.
Take charge of your health, unload those toxins as soon as you can & you will feel better. You gooooo; but goo ssssssssslllloooooowwww. It is hard on your body to be hit with a sledge hammer
We are here for you, just reach out; someone will be awake from somewhere around the world. If you want to go to sleep, read my blog, lol
Grace & 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, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysThank you all! It's so
Thank you all! It's so very helpful to know that others are going through this and have sort of "paved the way." Your support and advice are so much appreciated!
I'm going to have to be offline for the next 5 or 6 days. Hopefully, when I come back, I'll have some progress to report with my doctors.
Take Care ~ and thank you all again!
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
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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
Finch, I'm on NACi, doxyi
Finch,
I'm on NACi, doxyi and Biaxin now but originally my doc started me on one 600 mg NAC a day, then 2 NAC and 500 mg amoxicillini 3 x daily. I began having cold symptoms among other things, but mild. About a month later he added Biaxin 250 mg 1 x daily which, with one dose, made my body feel on fire and my skin hurt, and so he took me off and substituted Cipro 250 mg 1 x daily. I eventually went off amoxicillin and cipro and started doxy 100 mg 2 x daily. After a week of doxy, if I wasn't feeling really bad, I was to start Biaxin again at 250 mg once per day, which I did.
My doc said the cipro was a quinoline and was an ok substitute for Azithro or Biaxin (macrolides), but I assumed the Azith or Biaxin was stronger since it seemed to be everyone's first choice, so I wanted to switch back. Once I took doxy for awhile, I was able to take the Biaxin without a horrible reaction, although I was really scared of it.
What I'm leading up to with all these details is that, compared to the little baby steps of the Capi my doc started me on, yours sounds more like a big leap with one big dose of an antibiotic. I don't know if cipro is as strong as Azith or Biaxin, but it still may be a reasonable substitute according to my doc, and you are taking a whopping higher dose than what my doc started me on, and that was after he started me on NAC first and then on amoxicillin next. (Of course, I know nothing of dosage, so maybe I am wrong)
The lower doses I was (and still am taking) of all of the abx have given me multiple side affects and are making my muscles hurt more and more. Just one low dose of Biaxin scared me silly with a strong reaction. So it does not seem unreasonable to me to think that a very high dose of cipro might be causing you a bit of an overload of pain.
In addition, my doctor does something a little unusual in that he pulses all the antibiotics 3 days on and 2 days off. I don't know if this is good or bad, but he swears it does not create resistance and is much safer for your body. Everytime I start a new pulse I feel more muscle pain than the last time, even with a two day break. And this is NOT flagyli, it is just doxy and Biaxin. If I didn't go off for two days, I wonder how much worse I might hurt. Also I get very tired. It is tolerable, though, so far at least.
I read the results of a survey on this site that said that people with CFSi and FM seem to feel more intense discomfort in terms of side effects than those that have different disease symptoms. So again, it doesn't seem unreasonable to me that you may be more sensitive to abxi side effects and feel more pain than someone else with different disease symptoms and with CPni in other areas of the body.
I'm pretty new, so take my post with a grain of salt but, if I had to guess, I'd think that your instinct is right that the Cipro is effective, and perhaps is a little too effective at that starting dose, that is, if you aren't tolerating it well. My strategy is to stay just one step on this side of the fine line between discomfort and disablement, and you are the only one who knows when you are the wrong side of the line.
Another thing I would consider is that, according to what I have heard, taking more than one antibiotic at a time safeguards against CPn becoming resistant. So it would worry me to only be taking one antibiotic for very long.
I think you are doing the right thing by researching this more and becoming a partner with your doctor in your treatment. Check out the Summary Chart of Different Protocolsi on this web site and check out what other people started with and work with your doctor to come up with something you are more comfortable with.
Sorry so long. I'm finding that for some reason I'm incapable of saying anything succinctly. It may be just my nature, but I'll blame it on brain fog...I seem to need to ramble along for awhile before I can ever get to a point.
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPn titer 1:256. CAP 6-07 Current NAC 1200 mg; doxy 100 mg x 2 and Biaxin 250 mg with 3 days on 2 off cycle and holiday wks 6,7
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.