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17 yrs of constant antibiotics
By Lynnp
Created 07/03/2008 - 4:01pm

  • Cpn treatment experiences
Is there anyone here that has been on continuous antibioticsi [1] as long as I have?  I just want some reassurance that I can get well.  I've also been on Flaygl 2 weeks at a time off and on for years but never at the same time with an antibiotic.  My ent would never put me on vancomycin in case I would need it if I was near death I guess.  A lot of antibiotics don't work but maybe that's because I've always been trying to treat sinus infectionsi [2].  I've had my share of sinus bugs, sudamonas twice, fuserium, aspergillosis, staph, etc.  Anyway, I would appreciate any response.  Also, it is so hard when your family doesn't believe that you can be so sick so often so this website validates the fact that I'm really sick and not just making it up!

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FMSi [3]i [3]/CFS 1995. tinnitusi [4]i [4], ibsi [5]i [5], sinusitis, EBVi [6]i [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

Lynn can you add a

Submitted by Michele on Thu, 2008-07-03 16:52.

Lynn can you add a signature line to your blogs and forum posts.   There are instructions on how to do that in the Getting Started module.

There are so many different antibioticsi [1] that your phrase 'continuous antibiotic' does not mean much to me.   If you have been taking the same antibiotic for a long time it is possible that your bacteria might have developped a resistance to it, but there will be others that it would not be resistant to.   Doxycycline and Azithromycin taken in combination will prevent replication and therefore adaptation to antibiotics.   If Doxycycline is one of the antibiotics you have taken for a long time or in many repeated courses, then there will be another in the same category that might be effective for you.

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Michèle (UK) GFAi [8]: Wheldon CAPi [9] 1st May 2006. Daily Doxyi [10], Azi MWF, metroi [11] pulse. Zoo keeper for Ella, RRMSi [12], At worse EDSSi [13] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Just stick to one of the

Submitted by lee mcghee on Thu, 2008-07-03 18:57.
Just stick to one of the protocls on this webpage and youll be fine. dont jump around and look for a miracle pill. Also if you want to get tested thats ok but test or not id get on the protocol becuase sypmtoms are enough

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Fibro, CFSi [14],  Myco, CPNi [15], Wheldon protocol, Zithro 250mg M/W/F/S, Doxyi [10] 100mg 2x day, NACi [7] 1200mg 2x day,  Flagyli [11] pulses 400 mg 3x day

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I've been tested and hope I

Submitted by Lynnp on Fri, 2008-07-04 00:01.

I've been tested and hope I find out next week but my doc is almost positive that I have cpni [15] and other stuff.  No, I've taken lots of different kinds of antibioticsi [1].  Never took much doxycillin.  I've taken the really strong antibiotics some that you have to have a picci [16] line and do at home for 6-8 weeks at a time, many times.

Michele, is the signature line the same thing that I filled out when I joined with my meds and diagnoses?  When I tried to edit it came up blank.  Do I have to retype everything I first typed when I joined?

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FMSi [3]/CFS 1995. tinnitusi [4], ibsi [5], sinusitis, EBVi [6], NACi [7] 2400mg, valtrex, cortef, armour, doxy, biaxin, calcium pyruvate, vita c 10,000 daily, etc. 

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Lynn- I'd follow Lee's

Submitted by Jim K on Fri, 2008-07-04 09:44.
Lynn- I'd follow Lee's suggestion to just start with one of the standard CAPi [9]'s and stick with it for a while. Dr. Wheldon's version is the easiest to work up onto. Your physician can then add some additional agents that you are unlikely to have taken and also have different mechanisms of action (so hit the bacteria from a different quarter) like INHi [17] or Rifampin as you have a stable platform of treatment. The key in treating Cpni [15] is to have all the agents working at once (continuous antibioticsi [1] still going while doing pulses so that all agents are acting during the pulse) rather than alternating single drugs, which gives the bacteria an escape route to survive through. The worry is less about resistance than about chasing the bacteria from one form to another and never getting ahead of the process.

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CAPi [9] for Cpni [15] 11/04. Dx: 25yrs CFSi [14] & FMSi [3]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [18] 1000mg/day pulses; Vit D2000 units, T4 & T3

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Perhaps viruses are the

Submitted by Timaca on Sat, 2008-07-05 14:36.

Perhaps viruses are the cause of your problems now.  They can reactivate, and all the antibioticsi [1] in the world won't kill them off.

Try to get tested for HHV-6 and EBVi [6].   See www.hhv-6foundation.org [19] for more info.

Best,   Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [6], VZV, and HSV1 6/07. Diagnosed with CPni [15] 5/08. On antibioticsi [1] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [10] bid for Cpn and acyclovir for viruses.

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Lynn - I know you mentioned

Submitted by Daisy on Sat, 2008-07-05 15:15.

Lynn - I know you mentioned you live in a new house but you may still have mold issues.  I use to live in Halle in Collierville in a new house and the mold counts when I mold plated the house were still fairly high.  It's a function of Memphis humidity and air conditioning. 

Getting mold counts down below 4 in the house and car plus using the amphotericin B spray, plus Gentamycin with fluconzole spray, plus steriod spray, plus montelukast nasal spray finally cleared up my problems.  But it took getting the mold colony count down below 4 plus continuous use of sprays before it got considerably better.

May not work for you, but throwing it out there...

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Daisy - Husband on CAPi [9] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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