It's hard to imagine that, with no reactions to a 28 day Tinii [6] course, he could have a delayed reaction after stopping. I mean, if there is no apparent bacterial kill during the tini pulse, then how can there be post-pulse reaction-- usually understood as accumulated apoptosisi [7] and inflammatory reaction to cell debris clean up. On the other hand, who knows what effect Tini might have had on viruses. Any evidence around that these agents might have anti-viral effect?

___________________________________________________________

 

CAPi [4] for Cpni [1] 11/04. Dx: 25yrs CFSi [8] & FMSi [9]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [6] 1000mg/day pulses; Vit D2000 units, T4 & T3

Has he been evaluated for borrelia burgdorferi?  Reactivation?  May be a good time to test for it now, could show positive.  Use one of the labs that report all the bands.  Just a suggestion.

___________________________________________________________

Louise  CFSi [8],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [10] +fattyEndotoxins HS PRN, Wheldon CAPi [4] 6/07,all supps, Doxyi [11] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Depending on how high his antibody titers are for HHV-6 and EBVi [2], he may want to consider treating those viruses first, then revisiting the Cpni [1] issue later (especially since he didn't have high antibody titers to Cpn).

For info on viruses see www.hhv-6foundation.org [12].

Best, Timaca

___________________________________________________________

Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [2], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [13] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [11] bid for Cpn and acyclovir for viruses.

Timaca, could you explain your opinion that CPni [1] would be best treated secondarily and not at the same time as viruses?  I see that you are on both Doxyi [11] and Acyclovir currently is that still accurate?

___________________________________________________________

Louise  CFSi [8],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [10] +fattyEndotoxins HS PRN, Wheldon CAPi [4] 6/07,all supps, Doxyi [11] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Hi Louise~   Yes, I am on both an antibiotic (for Cpni [1]) and an antiviral (for various viruses--HHV-6, EBVi [2], HSV1).   I have high antibody titers to these pathogens.   Hence we are treating them the best we can.

If someone is presenting with high antibody titers to viruses, and not to Cpn or other bacterial pathogens, then it seems prudent to treat the obvious.  (The pathogens that one has antibody titers too).

Since you can't tell the difference by symptoms whether you are battling a virus or a bacterial pathogen, you have to rely to some extent on lab testingi [14].

I understand that it is noted on this site that one can have Cpn and not present with antibody titers.  

However, in my personal experience, I've come to the point of treating the obvious, not the less obvious.  

It saves the body from undergoing unneccessary treatment.

Hope this explains my recommendation above to explore the viral issue first.

Best.....Timaca 

 

___________________________________________________________

Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [2], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [13] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [11] bid for Cpn and acyclovir for viruses.

Thanks, Jim, Louise, and Timaca for your helpful feedback.

I suspected 4 weeks out was a stretch on a delayed reaction to Tinii [6], though Dr. Stratton's suggestions to take just one dose of each antibiotic and wait 2 weeks to see what happened made me think about the possiblity.

We are testing for Borrelia Burgdorferi and Bartonella now, just sent spinal fluid to the Igenex lab in California. I have both Lyme and Cpni [1] and EBVi [2] and HHV6 and we've shared the same environment for years, so he could have any or all. As Timaca says, despite the lack of reliability of testing, we've got to start somewhere and try to do a differential diagnosis.

I'm suspecting chronic infection because of symptoms of malaise, fatigue, joint and muscle pain, loss of muscle, insomnia, macular degeneration, and cognitive/memory problems that have been building over the last decade or so, albeit very slowly. This recent acute illness came after starting the supplement part of the Wheldon/Stratton protocol which seems like it could have boosted an immunei [15] response and hence a die-off. It could be any number of things beyond infection though, so hopefully testing will help us start to narrow it down. Asperger's and its health implications might be a common component as well.

I appreciate your thoughts!

Marysia

CDC Lyme Western Blot positive 02/06, Cpn, HHV6, and EBV positive 03/08; Currently taking Bicillin IM, Azithromycin, Minocycline, Plaquenil, weekly Diflucan, and most of Wheldon/Stratton protocol supplementsi [5] as well as attempting monthly Tinidazole pulses. Calcium pyruvate seems to be helping mitigate die-off symptoms from treatment.

Marysia, His profile of symptoms that you share sure sound like my presentation, minus the macular degeneration (I have been on Omega 3 high dose for 10 years and 40,30,30 diet as well.)   I too am finding Calcium pyruvate post abxi [13] helpful in sustaining my energy along with Sam-e and Bcomplex, and S.O.D. 3 (beef liver based formulation).  And I off and on take cholestyramine to keep porphoria at bay which works best for me.

I learn so much from well written signatures and see from yours that we share CPni [1] and Bb in common.  I found CPn first then after some treatment was tested for a full infectious screen. Amazingly my viruses are negative, including a complete liver virus workup this past winter.  Regarding my Bb, my western blot was sent and returned  postive after 3+ weeks on Doxyi [11] 400mg/day last July. Enough time on high dose doxy to kick my immunei [15] system into recognizing it.   My CPn antibody tests had been very positive in May and I started Doxy 400 mg in June 07.  Quite a sledge hammer for me, it really put me way down further than when I had started from down.   I continued this for 14 weeks, fired up my liver enzymes and cut myself back to 200 mg and added Roxi.  I have been tested for all the viruses possible and none are active amazingly.  Last fall my CD-57 (indicator for chronic Borrelia Burgdorferi infection) was significantly depressed and that was drawn after 4 months on Doxy so Borrelia remains as my co-infection to CPn, from my perspective.  I say this because I have had CPn creeping up and taking over for many, many years, possibly 30 or more.    With the exception of these chronic bacterial infectionsi [16] I am quite healthy with few degenerative processes actively indicated, for years my fatigue was just written off by MDs.    So enough about me.

What I am truely curious about is your statement "Asperger's (syndrome) and it's health implications might be a component as well."  Would you be willing to say more about what you understand here.   I've been reading some lately about Asperger's and most is from the mental/emotional/relational perspective.  I have not see any physical perspective in my readings.   Any links to sites would be appreciated if you have them.

___________________________________________________________

Louise  CFSi [8],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [10] +fattyEndotoxins HS PRN, Wheldon CAPi [4] 6/07,all supps, Doxyi [11] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Ah, Asperger's!  Thanks for asking about it, Louise. We're discovering that we fall into the high functioning side of the Autism spectrum in my family and the latest buzz in Autism/Asperger's/ADHD circles is an unexplained propensity for chronic infection that can cause and exacerbate problematic symptoms and behaviors. A few docs and scientists are putting info out there about it.

From the Lyme perspective, Dr. Steven Harris (see the link below to lifeontheice's response to Daisy's post re: Cpni [1] and Lyme) and Dr. Klinghardt are talking about it at conferences:

http://cpnhelp.org/what_chamydia_pneumonia_c [17]

http://lymebook.com/blog/tag/dietrich-klinghardt/ [18]

Amy Yasko, PhD is also putting treatment theories forth based on genetic testing results from the Autism perspective, and Rich Van Konynenburg is applying her ideas to Chronic Fatigue patients. If you Google these two names you'll find info (I'm afraid the spam catcher might flag me if I post too many here.)

I'm very interested in this line of thinking and wonder if it could help explain why my family seems plagued with chronic illness. At this point all I can find is anecdotal evidence either for or against this line of thinking, so I'm gathering as much information as I can.

Raven has had the Yasko genetic testing and I'm hoping that it's bringing her good results. I'm curious to hear all about it.

I'm glad discussions about the Autism spectrum are popping up on cpnhelp. Perhaps it's an area that can help some of us get better.

Marysia

CDC Lyme Western Blot positive 02/06, Cpn, HHV6, and EBVi [2] positive 03/08; Currently taking Bicillin IM, Azithromycin, Minocycline, Plaquenil, weekly Diflucan, and most of Wheldon/Stratton protocol supplementsi [5] as well as attempting monthly Tinidazole pulses. Calcium pyruvate seems to be helping mitigate die-off symptoms from treatment.