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 [3] 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 [1] 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 [6] 5/07.   Roxyi [12], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [7], Azithromycin, Flagyli [4], Minoi [13]}

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Daisy - Husband on CAPi [6] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

 Rieve- I echo Daisy's comment. If you are reacting to the CAPi [6] meds you still are killing Cpni [2]. In most infectionsi [14] low titers are a reasonably accurate indicator of infection clearance. But this is not true in a persistant intracellulari [15] organism where intracellular infection does not expose it to the immunei [16] 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 [10] & FMSi [9]. Protocol: 200mg Doxyi [7], 250mg MWF Azith, Tinii [17] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [6] for Cpni [2] 11/04. Dx: 25yrs CFSi [10] & FMSi [9]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [17] 1000mg/day pulses; Vit D2000 units, T4 & T3

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 [16] reaction thing."

I don't know whether to go up to 500 mg Biaxin (as Daisy mentioned) or Flagyli [4] 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 [5], rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni [2] titer 1:256.  CAPi [6] 6-07 Current NAC 2400 mg; doxyi [7] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [8]

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Memphis,TN - FMSi [9], IBSi [5], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [2] titer 1:256.  CAPi [6] 6-07 Current NAC 2400mg; doxyi [7] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [8].

Oh, I am slow tonight.  Daisy, I understand what you were asking me now.  I called it NACi [1] flu because that is what I thought everyone on this site called any flu-like reactions, regardless of what abxi [3] 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 [19] 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 [5], rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni [2] titer 1:256.  CAPi [6] 6-07 Current NAC 2400 mg; doxyi [7] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [8]

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Memphis,TN - FMSi [9], IBSi [5], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [2] titer 1:256.  CAPi [6] 6-07 Current NAC 2400mg; doxyi [7] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [8].

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 [2] 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 [6]-with or without his help. 

Before I could talk with him about my decision, my test for EBVi [21] and CMV came back.  I tested positive for both and the levels were extremely high.  I'm taking NACi [1] and am ready to restart Doxyi [7].  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 [22].  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 [3].  Anyway, it is best if you are prepared.  Good Luck and let us know what happens.    

 

 

FMSi [9]/CFSi [10] 12 yrs., IBSi [5], 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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 FMS/CFSi [10] 12 yrs., IBSi [5], Hypothryoid, EBVi [21], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [2], On and off CAP since 10-1-07, Currently on NACi [1] & Delta Fr. E Doxyi [7]., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

Reve - this was the main pointhow i got to this site. I have had a long term monotherapy as i found a doctor who at least believed that CPNi [2] can be a longer term chronic sickness. As far as i got my negative titer he stopeed treatment and reasoned that i am clear now. Well i still had die off and didnt really feel that good! So thats how i found this site actually and Wheldon's which made me sure that i am right and i need to go on with therapy. I started the Doxyi [7]-Azith. NACi [1] protocol a while ago and i think i am on the good way now!i had no idea what i was doing in the last few years (neither my doctors) but i knew 100% it is cpn and i have to get healed! I didnt even know that it is so complex, i thought that i will take one medicine for long enough and i will get rid of it easily maybe not quickly. I was wrong...lets hope the best for You as well as for everybody being on this site.

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doxy200, azith250, NACi [1] 2400, Metroi [4] 1250(once a month), supplementsi [8], vitaminsi [11].

Reve - You are correct ! 

Naci [1] "flu" are the flu like signs and symptoms many here report upon taking NAC.  This would be die off from the EBi [23] form of CpNi [2].  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 [3] cause the same effect via die off RB and Cryptic forms of CPN - a feeling of having a flu - is usually endotoxini [24], cytokinei [25] or porphyriai [26] 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 [6] 5/07.   Roxyi [12], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [7], Azithromycin, Flagyli [4], Minoi [13]}

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Daisy - Husband on CAPi [6] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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 [22]. It will be interesting to see how long he will give us our antibioticsi [3]. 

Reve, I dont think you are having NACi [1] 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 [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni [2], myco, EBVi [21], CMV. NAC 4000mg, doxyi [7] 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli [4], tinii [17]<

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Mphs, TN. CFSi [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [2], myco, EBVi [21], CMV. Capi [6] began in 6/07. NACi [1] 2400mg, doxyi [7] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [4] pulses

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 [24] (as it seemed as if my body was trying to flush something out of my system) and/or cytokinei [25] (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 [21] 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 [5], rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni [2] titer 1:256.  CAPi [6] 6-07 Current NAC 2400 mg; doxyi [7] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [8]

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Memphis,TN - FMSi [9], IBSi [5], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [2] titer 1:256.  CAPi [6] 6-07 Current NAC 2400mg; doxyi [7] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [8].

They aren't reliable and that is a problem for doctors who don't understand the problems of Cpni [2], 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 [27]: Wheldon CAPi [6] 1st May 2006. Daily Doxyi [7], Azi MWF, metroi [4] pulse. Zoo keeper for Ella, RRMSi [28], At worse EDSSi [29] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [27]: Wheldon CAPi [6] 1st May 2006. Daily Doxyi [7], Azi MWF, metroi [4] pulse. Zoo keeper for Ella, RRMSi [28], At worse EDSSi [29] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006