Just a quick update since I've not posted in awhile. I increased my Biaxin dose to what I believe (from what you all have told me) is an effective dosage, that is, 250 mg x 2 daily. I did this a little over a month ago. I felt no effects for awhile. Then, these last two weeks, I have been feeling very groggy (sleepy) and taking a long nap in the daytime sometimes. I felt less energetic, more discomfort in my muscles (fibromyalgia) and wondered, AGAIN, what is wrong? Are my meds loosing power? Am I sliding backwards?
But no, as usual, my worries were all unfounded, as what really has been happening, apparently, has been a build up for another NACi flu. I started to have a little NAC flu in the morning for a couple days. Yesterday I felt nauseated and not very hungry and rather impatient when doing anything. Then I woke up this morning with what I would call a full blown case of NAC flu. I felt like vomiting (but didn't), felt very weak, felt very dizzy and light headed, and my intestines insisted on eliminating their contents all morning. I felt chills and my skin turned red and itched, and my intestines, bladder and abdominal area seemed more painful (I assume inflamed). These are the same symptoms I always get with NAC flu, so I know that this is nothing other than NAC flu. Previously, I have gotten other symptoms, too, but seem to be getting them less now, like soreness behind my eyes and jaw pain.
I took a benedryl tab (useful for itching reactions and also great for helping one sleep) and will probably take a nice long nap and hopefully feel better soon. I don't like NAC flu, but , even more, I hate feeling tired and sick for no reason. So, I am always greatful for NAC flu as a now familiar sign that my meds are still working and I'm on the right track. I realize now that it is hard to predict when reactions will hit me. They used to hit quicker, and now seems to happen later, perhaps as a factor of the amount of increase in meds or the time needed for die off to occur.
My doc wants me to have another CPNi antibody titer as he believes that if my titers are down, the bug has cleared and I can stop taking meds. Does anyone have any comments on if this is a good way to tell when to stop taking meds? What he says makes sense to me in a general sense (without having a lot of knowledge on the subject). Nevertheless, I am understanding from this site that one usually stops taking abxi when one stops getting reactions, and I have not stopped, so I don't think the titer will show any reduction and it seems a bit premature to even do one yet.
I will get another titer, but as far as I'm concerned my titer should stay the same or rise because I still have reactions to meds, and haven't even started flagyli yet. I don't know why my doc thinks that my CPN might have cleared yet since I still am having strong reactions. All I can deduce is that he is such an optimist that he just can't think any other way.
I hope my titer confirms that I am still fighting CPN as my body is still telling me so. Then my course of action will be simple, and I will start flagyl soon. If my titer is low, I will be confused and will also have a more difficult time getting my doc to prescribe flagyl for me.
My progress seems to be slow, but positive. Since I have only managed to get to a standard dose of Biaxin 1 month ago (although I started in June, 07) this progress seems very satisfactory to me based on my slow (perhaps too slow?) increase in meds.
I am still ever greatful for this site and am still amazed at how many people that I know would rather stick with traditional (non cutting edge) medicine that is, by their own accounts, not helping them greatly, yet will not invest even a a few minutes in checking this info out. This especially surprises me when this protocol is founded on research from Vanderbilt University and is not expensive or terribly radical (in terms of carrying it out). Well, I'm thankful that everyone isn't like this or we wouldn't have this site and we wouldn't have people's footsteps to follow who have gotten better by "taking their lives into their own hands" as one person's (from this site) doctor so appropriately put it.
Any comments on titers being useful for deciding when to stop taking meds would be greatly appreciated.
Reve
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPn titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2, Biaxin 250 mg x 2, supplementsi
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Memphis,TN - FMSii, IBSi, rhinitis, depres (~20 yrs) CFSii, 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, supplementsii.
Reve - Titers are probably
Reve - Titers are probably not the best indicator of time to stop antibiotic therapy. A better indicator is that you feel better and have stopped having a reaction to the antibioticsi in various combinations over time. If you stop too early you may regress.
Glad to learn you are better tolerating Biaxin 250mg twice daily. Perhaps a goal would be to move to Biaxin 500mg twice daily.
You mention Naci Flu alot - have you increased your dose of NAC recently? Is this why you are saying NAC flu?
Glad to hear from you!
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. "When Going Thru Hell, Just Keep Going", Winston Churchill
Rieve- I echo Daisy's
Rieve- I echo Daisy's comment. If you are reacting to the CAPi meds you still are killing Cpni. In most infectionsi low titers are a reasonably accurate indicator of infection clearance. But this is not true in a persistant intracellulari organism where intracellular infection does not expose it to the immunei system. So your doctor is applying a usually accurate medical guide without understanding that the guideline doesn't fit the biology of the particular organism. At this point, only lack of reactivity to the full range of CAP antichlamydials is a reliable guide to clearance of Cpn from one's system.
CAP for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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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
Jim and Daisy, Thanks
Jim and Daisy,
Thanks for your comments. The actual reasoning behind why the titers are not reliable is very useful for me to know(which you gave me Jim), and I will keep this in mind as I talk to my doc, and it will be important to remember when I get the titers results. Yes, it is obvious to me that I'm still reacting and I imagine that I'm still going to for awhile yet. I would think that my reacting and higher titers should go hand in hand (if I get the titers done while I am reacting), but maybe that's too simplistic? Anyway, I don't know much about titers but I do know when my body is telling me it is having die off, so I think that is as reliable an indicator as any.
Daisy, I mentioned it above, but I increased my dosage of Biaxin by 125 mg about a month ago, and had a rather delayed die off reaction after a period of extra tiredness. Fortunately I'm already feeling better by this evening except that my whole body (joints or muscles?) started aching this afternoon. I imagine the aching will go away soon and I'll feel better now that my body has done its "immunei reaction thing."
I don't know whether to go up to 500 mg Biaxin (as Daisy mentioned) or Flagyli next. I'm still wondering if 500 mg is a requirement as the last time I posted that question I got a mix of answers listing 250 mg or 500mg as a standard dose. Again, any useful comments on this will be greatly appreciated.
Thanks again,
Reve'
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2, Biaxin 250 mg x 2, supplementsi
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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.
Oh, I am slow tonight.
Oh, I am slow tonight. Daisy, I understand what you were asking me now. I called it NACi flu because that is what I thought everyone on this site called any flu-like reactions, regardless of what abxi caused it. I always wondered why, but I figured that if one is always taking NAC, maybe they were attributing all the reactions to the NAC/abxi combination or something. I got this idea from some postings on this site, but maybe I misunderstood. Maybe I'm calling it the wrong thing and should just call it a flu-like reaction to abx, and NAC flu is only to NAC? Anyway, I just meant I was having a flu-like reaction. My dosage of NAC is the same as it has been for awhile at 2400 mg.
Reve
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2, Biaxin 250 mg x 2, supplementsi
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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.
Reve, Your concern about
Reve,
Your concern about titers is on target. We have the same doctor and my titers did come back in the normal range. He did tell me my Cpni was cleared up. I pointed out that I was still having die off reactions. He didn't have an answer for that. And, I asked him why I still felt awful. After getting feedback from folks here, I made up my mind that I'm staying on CAPi-with or without his help.
Before I could talk with him about my decision, my test for EBVi and CMV came back. I tested positive for both and the levels were extremely high. I'm taking NACi and am ready to restart Doxyi. However, I'm trying to ramp up on the Valtrex (anti-viral) so I'm delaying a bit on the Doxy.
I don't want to get into a debate with him about the CAP. I'd lose for sure. He seems to be ignoring the cryptic formi. I'm telling you this so you can be prepared in case your titers are in the normal range. Decide what you think is best for you. Then ask him to support you. It seems like he is backing off of the use of longterm antibioticsi. Anyway, it is best if you are prepared. Good Luck and let us know what happens.
FMSi/CFSi 12 yrs., IBSi, Hypothryoid, EBV, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpn, On CAP since 10-1-07, Currently on NAC only, From Memphis-USA
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FMSi/CFSi 12 yrs., IBSi, Hypothryoid, EBVi, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni, On CAPi since 10-1-07, Currently on NACi & Delta Fr. E
Valtrex,Lysine, andGuna VirusReve - this was the main
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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.
Reve - You are correct !
Reve - You are correct !
Naci "flu" are the flu like signs and symptoms many here report upon taking NAC. This would be die off from the EBi form of CpNi. Some report feeling like they are having an allergy attack, coming down with a cold, feeling flu like. etc... It usually resolves for most but not all here fairly quickly (in a couple of weeks).
When antibioticsi cause the same effect via die off RB and Cryptic forms of CPN - a feeling of having a flu - is usually endotoxini, cytokinei or porphyriai related.
If it's the antibiotics causing you to feel like you have the flu, then there are various rememdies discussed here such as Vitamin C flush, Epsom Salts baths, calcium pyruvate, antiporphyria measures to name a few that may make you feel better faster.
To me it' always hard to tell without trial and error of the remedies above as to which one it is causing you to feel bad.
So while it's possible you are still experiencing some NAC flu from the 2400mg you have been on for a while, it's more likely it's endotoxin, cytokine of porphyria triggered by the antibiotics.
Good luck with your treatment !
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. "When Going Thru Hell, Just Keep Going", Winston Churchill
I have same doc as Reve and
I have same doc as Reve and Marcia. Doc wanted to draw my titers in December, and I said NO THANK YOU. I dont think doc believes in the cryptic formi. It will be interesting to see how long he will give us our antibioticsi.
Reve, I dont think you are having NACi flu. I think you are experiencing die off reactions. Those die offs can come and go. For couple of weeks, I feel fine. Then all of a sudden, I wake up one morning and I hurt from waist down.
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NAC 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 2400mg, doxyi 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli pulses
Thanks everyone for all the
Thanks everyone for all the good info. I will be prepared in case my titer is low. I'm still feeling very flu like today, but a little better. It is always worse in the morning, but with a stronger reaction like this I still feel yucky all day. I think this should be endotoxini (as it seemed as if my body was trying to flush something out of my system) and/or cytokinei (the flu and body aches). If cytokine, it seems logical that my titers should be up, but again, I may not understand all this that well. I'm going to go get the bloodwork today. I'm also supposed to be getting a test for EBVi and something else. I'm almost afraid to find out what those titers are, but again, they probably aren't reliable either so I won't make too much of them either way.
Reve'
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2, Biaxin 250 mg x 2, supplementsi
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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.
They aren't reliable and
They aren't reliable and that is a problem for doctors who don't understand the problems of Cpni, you can't evaluate it's severity by looking at the numbers.... So it's not just you, Reve who has to take the numbers with a pinch of salt....
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
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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