Cpnhelp.org - Chlamydia Pneumoniae Treatment

I'm on doxyi for Cpni, and was previously on valcyte for high viral antibody titers, which normalized with the valcyte, but went up again when I went off the valcyte, so now I'm on acyclovir (for the viruses) as well as doxy....Acyclovir is the active ingredient in valtrex (Did you follow all that? )

 So, at least in my case, based on my antibody titers, I am fighting both viral and bacterial pathogens.   And yes, starting the acyclovir made me quite ill...and while I've pulled out of the very ill phase, I'm still worse than prior to the acyclovir (which was started just 2 weeks ago).   I anticipate that in a few months I'll see some improvements (I wish I could say in a few days...)

My doctor wanted me on acyclovir instead of valtrex, as doxy is processed in the liver.  So is valtrex.  Acyclovir is not.  He wanted less stress on my liver, hence the choice of acyclovir over valtrex.

What kind of symptoms hit you when you started valtrex?   When did they hit you?

 Best,   Timaca

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

Timaca thanks for the information on acyclovir. I was looking at you signiture and we are almost twins. My signature needs to be updated now that I'm thinking about it.

 As for the Valtrex, I wasn't aware that it was processed in the liver like many of my other meds. after everything my liver has gone through it must glow in the dark by now. My doctor does'nt seem to be on the mark like yours, we need less stress on the organs that help us remove all the toxic waste.

 I started Valtrex about two weeks ago and have been waiting it out hoping to get some sympton relief. My symptoms have been low grade temps. with burning flushing skin. Extreme fatigue, headaches, pain in my spin and neck.

These areas have always been a cpni problem before the Valtrex but have return with twice the impact.

Do you feel it is important to remain on the acyclovir to lower the viral load to help you improve over all? You seem to have a doctor who is loking at the whole picture and I'm confused

                           Bonnie
 

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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.

Hi Bonnie~

My story is posted in more detail at www.hhv-6foundation.org   There is a patient's forum there.  I'm Timaca there.  There is a thread entitled my viral test results....and another about Timaca, Deedee's and Cat's valcyte journey.    

Basically, my HHV-6, EBVi and VZV antibody titers were quite high.  (We had not tested for Cpni at this point in time).   With valcyte they dropped to normal levels (more or less)....and I saw significant improvement.  But, I wasn't well.  We then tested for other pathogens, and Cpn came back quite high.  So, I was started on doxyi, and not put on a less potent antiviral to keep the viruses in check at that time, for he wanted to put me on only one medicine at a time (which I thought was wise).  

By the time I was seen next, my viral titers had gone up significantly, while my antibody titers for Cpn had decreased (due to the doxy)...They were still elevated, but at least going down.

So, I was started on acyclovir, and the next 24 hours got REALLY ill.   Severe headache, flu like pain and extreme fatigue, very sore joints in my elbows, and feeling like I could die.   Normally, these herx reactions hit me later (day 10 - day 13).   I was surprised to get hit so soon.   But, I sure was ill.   On day 13, (yesterday) I did get ill too, just not near as bad....today I have quite a bit of neck and shoulder pain, and I spent 2 hours in bed! 

I do feel that for me it is important to take antivirals in addition to antibioticsi.   I know people who were sick only with viral pathogens, and they had to take antivirals to get well.    I am hoping that with the antiviral and antibiotic I can get well.   My doctor does not seem too inclined to prescribe the CAPi.   But, as long as he is getting results with the antibody titers to Cpn dropping, that is good.   I sure can't argue that he isn't making progress, because he is for now.   If that changes, then I will see how open he is to trying something else......

As long as your liver enzymes are doing OK, your liver is probably fine.  I have a friend who did valcyte and minoi fine, and now she is on valtrex and mino....liver doing OK.

Your doctor seems open to the CAP, which is good.   What were your titers for Cpn and EBV?   Have you been tested for HHV-6 and mycoplasma?  How much valtrex are you on?   

Seems like we started our antivirals at the same time.  I started acyclovir 2 weeks ago....just like you...

Hopefully, we will both pull out of our antiviral slump soon!   I definitely have felt worse since starting it!   Let's hope that is a good sign!

Best,

Timaca

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

Timaca- I'm on board with everything you have said about the importance of viral treatment in a polymicrobial illness. I'm sure that I'm saying what you already know, but dropping Cpni titers on a monotherapy antibiotic doesn't tell you anything about the overall infection, since it only measures antibody response to one aspect of the Cpn cycle. The continued existence of Cpn EB'si and cryptic bodies means that you can drop the titers to acceptable levels and still have a resurgence of infection once you withdraw the antibiotic (as you did with the Valcyte for example) as well as have increased symptoms like inflammationi from driving much of the Cpn into cryptic formi where it generates inflammatory HSP60. So you can argue with dropping titers as the measure of whether you are beating the infection.

This is something like using the temperature of your house as the sole indicator for the state of the house. You turn on the AC and lower the indoor temperature and say, "See, the temperature is cooler, we must have fixed the problem." But the broken windows are still leaking hot summer air and the lack of shades lets in the sun's heat. As soon as the AC goes off, up goes the temp. Maybe not the best metaphor, but you know what I mean.

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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

Hi Jim~   Yes, I understand what you are talking about.  And I do wish I was on the CAPi to give me the best chance of beating the Cpni.   However, that is not the place that I find myself.  I am very grateful for the doctor that I have, as he seems willing to address all the infectious pathogens that I'm dealing with....few doctors are willing to do that...

I do not feel that it is my place to say that how he treats Cpn is not the best approach.  The truth is, no one really knows.  There have not been enough studies done to show which approach works the best.  (At least I am not aware of lots of studies...)  We are going on clinical observations of a few patients....which is sometimes all that there is, and all that one can go forward with until there is better research.  (That is what my doctor is doing with regards to viruses, and I am so glad he is stepping out in that way)

I would however (given the choice) lean towards the CAP protocol...for I understand about the different life forms of Cpn, and would want the best chance of eradicating all the various forms...

So, for now, I am on doxyi only, wishing I could at least add flagyli.  Given my 11 month bout of C. difficile, adding more antibioticsi is a bit scarey to me, although my C. diff doctor has said that azithromycin should be OK for me...

I have thought of your case, Jim, having briefly read your last post.   Have you been tested for the various viruses???  

Thanks as always for your input....Timaca

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

Jim, you are right about continue measures of capi used along side fighting the virals. My concern is building up EBi loads with the method my doctor is going.  By my signiture you can see I haven't started the NACi with the rest of the protocol. Could I be causing the cpni to build up in cryptic formi? I haven't started the NAC because of the change to Valtrex and getting used to it.         

 

 I'm looking for the correct way of dealing with both, viral and cpn.

  thank you.

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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.

Jim,

Your post was good for me to read too.  Thank you.  I can see how testing may only confuse matters more and that my reaction to the Tindamax and maybe even more reaction to minoi and zithi with pyruvate use would be a much stronger indicator that using CAPi is definitely the way to go for me right now.  

The evidence for me at this time goes to prove I am still suffering from an infection that is benefitting from CAP as used on this site, regardless of what I did before.  That's the good news. 

I was reading THIS page on David Wheldoni's site again last night (for about the 6th time) about the viral henchmen: 

"...It seems that HHV6 is what might be termed a 'henchman'. That is, an organism widely present in human tissues and which is roused from a state of inactivity to cause gross pathology in areas that are already compromised by a primary intracellulari pathogen. (It will be noted that Legionella pneumotropica is a strongly intracellular bacterium.) One might hypothesize that HHV6 may act as a 'henchman' in chronic infectionsi with Chl pneumoniae, which is of course also an intracellular pathogen. One might further speculate that eradication of the chlamydial infection, support of mitochondrial fatigue and restoration of normal immunei function might return HHV6 to a state of dormancy..."

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Hi Reenie~   Glad for the input from David Wheldoni.  I had read that before as well.  The only problem with Wheldon's theory is that I know people who had only infection with HHV-6, and not Cpni, who could not get well without antivirals. 

Thus, getting the Cpn under control may not enable your immunei system to beat back the HHV-6 (and other viruses).   It would be nice if that were the case; and perhaps in some cases it is.

 I am just stating that I do know some people who had only a chronic viral infection (and they were quite ill) who could not get well without antiviral medication.

Truly, in some of us, it would be interesting to know what pathogen reactivated first....in my case, due to how I was tested, I know when certain pathogens appeared to be active, but since I wasn't tested for all the pathogens at the same time, we don't know really when I got ill with what.

Best,

Timaca

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

Timaca,

According to Dr Powell if you are extremely immunei compromised because of a bacterial infection, (viruses aren't supposed to be root cause to such damage typically) then even if you're body is too weak to show antibodies to the CPni you may still have that. 

I can't recall exactly where I read it (here or on Powell's site somewhere) but Dr Powell said he will test a well spouse of a sick patient if the patient is not showing the antibodies for the CPn because the CPn is so transmissable.  

So, I'm not saying I know, but that I'm only going by the "experts" and I'm trying to get well the best way I can find.  (aren't we all?)  

BTW, there was a time that I took Famvir (long, long ago) for my illness and I did feel somewhat better, I think, but I stopped taking it after about 18 months and didn't feel any worse off.  Maybe it helped, maybe not, but now I think my immune system is so compromised due to the D deprivation protocol I was on that I think I'd be better off giving the CAPi a chance first.  

What do you think? 

BTW, did the folks you know that used anti-virals relapse after stopping them?  Because if they did, maybe they had an occult bacterial infection that wasn't revealed in lab tests.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Reenie~   Hi!   I responded to your blog.  Yes, give the CAPi a chance first.  You sound quite ill and adding another medication which has the potential to knock you down further would be something I sure wouldn't do.   (Adding acyclovir recently has made me go backwards several notches!)

Apparently viruses can cause the immunei system to malfunction.  See:

http://www.hhv-6foundation.org/hhv6_induced.htm

Another thought with regard to testing spouses for antibodies of various pathogens.   Antibody testing shows exposure only, not active infection (although I know that we are all theorizing that high antibody titers likely indicate active chronic infection).    

I know of someone who had fully CDC positive western blots for lyme disease (IgM and IgGi).  He was healthy as a horse.  He had been exposed to lyme, but did not have active infection.  He sure had antibodies though.

I also know 2 people who had very high antibody titers to various viruses.   They are both healthy.  They are both married to people who  have suspected chronic viral infectionsi.  (Who also test with high antibody titers to the viruses).    The sick people are being treated for chronic viral infections, but the well people are not being treated.   Do they have high antibody titers because they are around people who do have active infection?   They don't have clinical symptoms of active infection going on.....just high antibody titers....

All I know (because of my journey thus far) is it is a very good idea to test for all the pathogens that can cause similar symptoms.   I do know it is possible to have a disease and not express antibodies to that disease.  I also know that some people will cling to the "I have "X" disease" and not get tested for every possible cause of their problems.   That isn't good.

The people that I know that used valcyte and got well have stayed on valtrex.....thus not allowing the viruses to come back.    Neither have tested positive for bacterial infections.

Hang in there...yes, we are all trying to read and understand and do the best we can to get well.   

I'd be interested in knowing what your antibody titers are to the various pathogens you've been tested for....it is great that you have a doctor that tested you for them!!!   That is awesome!

Best,    Timaca

 

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

Timaca,

It looks like we're see sawing back and forth from one blog to another!  LOL 

I've posted my viral titers HERE and will add the bacterial titers as well on that blog for you now.  

I guess what I'm wondering now, is if maybe because I'm boosting my immunei system now with CAPi and supplementsi, maybe this will cause the viral titers to get even higher.  It seems the supplementsi alone may have increased the mycoplasma. 

The Dr that did the viral tests for me was an ID Dr and thought it was a waste of time.  He doesn't believe in any of this stuff but I asked him to run the tests so that I would have something to use as a baseline and for my GP to rx me the meds which he has done.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Hi Reenie~

We are going in circles trying to read each other's postings! 

You will need to tell me how you are able to write "here" and have it link to your viral titers.   I don't know how to do that...pretty computer illiterite...

That is sad that the ID doctor doesn't believe in the higher IgGi titers possibly meaning active chronic infection.   Well, maybe someday he will.  At least he did run the tests for you.

 Sounds like you have a great PCP who will order the prescriptions for you!!    Good for that doctor!

Your EBVi, HHV-6 and CMV titers do look high.  As do you mycoplasma titers.  (I spent some time talking with Dr. Baseman's assistant and any IgG titer of 1:200 or above is when they begin to suspect active, chronic infection---doesn't prove it, just could indicate it....)

Your Cpni titers don't look elevated at all.   So, there is a possibility that Cpn is not your problem, but these other pathogens are.  (Or as others state here, it could be a problem...just not showing up in antibodies).

Your reaction to antibioticsi may be due to die-off of mycoplasma, which is also treated with antibiotics.

At any rate, you have lots to ponder, as do I.   

My titers are a lot like yours...but I'm high in Cpn and not mycoplasma.....so I'm trying to treat the Cpn and ignoring the mycoplasma...

Best,

Timaca

 

 

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

Timaca,

YES, we are going 'round in circles today. 

I had talked with Dr Stratton at one point and he said he considers "64" to indicate chronic CPni.  So along with YOUR expert's info and mine, I think we might figure this stuff out. 

You know, you're making me rethink the viral issue now, again, still...  

I suppose it could be that the bacteria infection WAS getting treated by the previous protocol, but the low Vit D allowed the mycoplasma infection to take hold of me.  I've considered this the reason for my horrid relapse last October and the failed protocol.  Too bad they don't want to learn over there as there are many others with similar experiences.  

Toll-like receptor triggering of a vitamin D-mediated human antimicrobial response.

However, now that I have this myco infection and I'm getting plenty reaction from the antibioticsi alone and increase of feeling lousy after pulses, I guess it doesn't matter which bacteria I'm going after but that I need to get rid of them all!!!

What remains to be seen is whether doing the CAPi alone will be enough to put the high viral titers back in the box. 

I would still like to do the Valcyte if I thought I could handle the die off effects and my labs would stay within the normal range, which was my strategy before I began feeling so puny lately.  I thought attacking things with the shotgun approach was the best possible method because this way regardless of what's making me feel ill, I'd eventually feel better. 

"Whatever doesn't kill you only makes you stronger" 

PS In order to link to a word as in THIS post (my new supplementsi for methylation) in Joyce and Steve's thread, just simply type your word and highlight it with your mouse.  Then click on the little chain link below the window in the editing panel and up will pop a window that says insert/edit link.  I open a second window in my browser with the page containing the hyperlink I want to copy and paste.   Then, simply copy and paste the link.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Timaca- I was tested for viruses, except the HHV-6, I think, as it wasn't yet available. I only had some prior exposure to EBVi show up. None-the-less, I did about 6 months of Valtrex, and another 3 months after a bit, both to no noticeable effect. I really don't think my symptom pattern fits the viral-like symptoms that are characteristic for a lot of this range of CFSi. But maybe it's time for retesting.

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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

Reenie~   I like your idea that you wrote to me via private message...

I will try to do the computer link as you explained.  But, not tonight, I'm too tired!   Maybe tomorrow!

Jim~  It wouldn't hurt to get retested for viruses (except for the needle stick and the cost!)    At least my mind would be at ease that you have ruled those out for sure!      

Here's a good lab for testing, and the codes for the various tests....

Focus Diagnostics Lab:  

http://www.focusdx.com/focus/1-reference_laboratory/index.asp

 

40540 HHV-6

 2420 EBVi Panel
 40543 HHV-7
 41380 Parvovirus
 41025 VZV
 2385 CMV
 40525 HSVi 1/2 ELISA
2075 Enterovirus Panel
40735  Mycoplasma Pnumonia

23000 Chlamydia Serologies

 

Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them.   Here’s some links as to how to get the testing done.   These links are at the HHV-6 website, and you must sign in to view the posts.

 

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=26

 

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=134

 

HHV-6 and EBV:  www.hhv-6foundation.org

I should state that the lab that Dr. Chia likes to use for Enterovirus testing is Arup lab in Salt Lake City.   So if you really want to rule in/out enterovirus, you can send you blood there.   However, it is possible to test negative in the serum for enterovirus, yet have active infection (gee, where have we heard this before?)

Best,   Timaca

 

 

 

 

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