Cpnhelp.org - Chlamydia Pneumoniae Treatment

 Adrenal or porphyric, that is the question. Have you tried propanalol for these symptoms? It treats the hyperstimulated type of symptoms of porphyriai. I wonder if it would calm these down?

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tinii daily (Continuous protocol)

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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

I literally feel pain in my adrenal area when it is stressed. I have some propanolol and have used it. My heart rate is usually slow and it slows it down even more, causes even more coldness in the extremities. But, yes it can help. Long term I don't think it's very good though. This was the first symptom for me in my 20's. Panic attacks and that revved up feeling of being stressed for no particular reason. I know lots of CFSi patients do have adrenal insufficiency, as most people with any long term illness do. Thanks Jim. Chris CAPi since 11/06 for CFS. Cpni, Myco P, CMV, HHV-6 infectionsi. Minocin !00mg MWF (working my way up). All supplementsi.

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CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

Chris.. I find most of what you are going through very similar. After starting the abxi I remember losing a wack of weight . I went from about 190 to 140 freeked me out. I also had those awfull nights where I would wake up in a panic , It was like my brain was on hold and bang something grabed , my jaw would be clenched and my breathing would be harsh.I also remember a strange feeling in my forhead. That lasted for a good 6 or 7 months. I went through periods where my stomach seemed to be so bloated. My eyes were doing some bizzare things , hard to explain,Almost felt like seizures. I have had some of this return lately since being off the abxi. My eyes are doing some strange things ,especially if I watch moving traffic,causes me to get dizzy.I also have the pain in the upper back (feels like the kiddneys ) I am schedualed next month for a scope for possible tumors on the adrenal glans . Just had another liver function test yesterday , hoping to get restarted with abx soon.... chuck

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treating reiters syndrome, cronic fatigue, heart symptoms, myalgia symptoms, started with doxcycline 200mg and rifampin 300mg in jan 15/05. switched to doxyi 200mg and azithromycin 250mg m.w.f in sept 06. after being on abxi for two years now doctors dont t

Both Ella and I have had adrenal issues, anxiety attacks and body temperature issues.   All I can stay is that it gets better, but it does take time.   I would not up your doses, just stay with it and work your way through it as best you can.   I am saying this from my own personal experience and we know that we are all different.

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi 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

Chris,  LOL, (here's another one we have in common) I also have adrenal issues, actually they started quite some time ago before my CPNi became chronic (or I even knew I had it)

With the adrenal issues were panic attacks  and I also had the attacks before my thryoid problem was diagnosed and would wake up at 3 AM and not be able to go back to sleep.

I take Seriphos and Adapt (made by Interplexus, Inc. ) as well as I was taking Isocort (by Bezwecken), DHEAi and some other supplementsi (all prescribed by my previous dr.)

When my adrenals are "out of wack", I usually have high a high cortisol level at night (when it is suppose to be low) and find myself waking up at 2-3 AM and then can barely make it through the day. 

Also, I always have had low blood pressure and my normal temperature was never 98.6 (usually ran between 96.0-97.8).  Since I have been taking the ABXi, my body temp has/is increasing (or am I running a fever because I'm killing cpn???) 

BUT since I have been taking the ABXi, I also have tenderness/pain in my kidney/adrenal area, which became so sensitive, my husband could not touch my side.  So I don't know if you want to increase your dose quite yet, but I can only state how my body has reacted.  I had a CT which showed nothing abnormal (well I do have a cyst on my left renal pole...) 

As Jim also indicated to me also, it could very well be the porphyins and increasing sublingual B12 and Vit C really helped me.  It's getting much better than it was.

I have no idea how CPN may affect our adrenals..... and I personally notice my back being more tender when I take the 200mg. We'll see if it eventually calms down when my body become adjusted to daily (instead of every other day) full dose of doxyi.

I have gained 20#'s in the past 3 years...which after heaing about PBS -- I think that's part of it.  I am still considered thin; but I am not comfortable with the weight I am at... my activity level, of course, is almost nil right now!

If it's possible you might want to have a 24 hour saliva test done ... this would definitely tell you where your cortisol levels are at.  The cost is usually about $120.00 and insurance (go figure) doesn't normally pay for it.

Here are two helpful links re adrenal support, diet, etc.  Hang in there!!

http://tinyurl.com/g7xsz 

  per Dr. Michael Lam

and  per Dr. Wilson

http://tinyurl.com/33vk4l

Be Blessed,  

Jeanne: Diagnosed 4/2007 w/ CPN, HHV6, EBVi, FM,CFIDSi; prior bronchitis/sinus; kidney infectionsi; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism/Azith 250, 1x/wk/ 5/27/07- Doxy 100mg/day, increasing slowly, supplementsi

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

Thanks Jeanne that is exactly what I am talking about! Best, Christian CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Minocin !00mg MWF (working my way up). All supplementsi.

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CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

Chris (and Annette)- I've been thinking about these adrenal reports. There are well known hypothalamic-adrenal-pituitary axis reactions to infection, which include increase of sympathetic tone and cortisol releases. These are also thought to be responsible for some of the sleep disorder problems in chronic fatigue and FMSi.

But I also recall Dr. Stratton's comment to me that, once in the blood stream and in the immunei system especially, Cpni can infect anywhere. As we know it gets into the brain (a la MS) it is also possible that it can more specifically infect pineal and hypothalamus (although there is no direct evidence of this). Of course, I can't see any reason why it couldn't infect the adrenal glands, as we know it will get into any of the filter organs, such as the kidneys. So if you have infected adrenal cells who knows what the reactions of this neuroendocrine gland could be? Annette's reports of kidney level pain associated with adrenal symptoms really makes sense to me. It argues going cautiously as, like the liver, you don't want to generate lot's of apoptosisi at once. I appreciate your attempts, Chris, to puzzle out your reactions in public space as we seem to be collecting more pieces to the CAPi/Cpn puzzle.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMS- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tinii daily (Continuous protocol)

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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

Adrenals & CPNi

Christian -- I found this information re CPN and the adrenals...sounds like the infection definitely causes the adrenal problems and enables the CPN to thrive in high corisol levels. This was excerpted from this link: http://tinyurl.com/29rkdb

 (actually this is from potbellysyndrome.com)

"There is one more source of excess cortisol that dwarfs all of those described above, and that is infection. HIV patients, for example, have elevated cortisol levels at all stages of infection and many of them have Cushingoid fat deposits on their necks, upper backs, chests, bellies and behind their ears.[20-23] The sizes of their fat deposits are closely correlated with their cortisol production.[24]

In 1986, Robert Da Prato and Jonathon Rothschild suggested that the AIDS virus raised cortisol levels enough to inhibit the body’s anti-AIDS strategies and produce what they called a "self-sustaining downhill clinical course."[25] Many common infectionsi raise cortisol levels even higher than HIV does, raising the possibility that there are millions of Americans whose chronic infections are complicated by similar cortisol-infection-cortisol loops.

Chlamydia pneumoniae (CPN) may initiate such a cortisol loop. There is abundant evidence that CPN thrives when cortisol levels are high.[26-30] The evidence that CPN raises cortisol levels is fuzzier, but there are two reasons to suspect that it does:

• CPN-even parts of dead CPN-stimulate the production of IL-1, IL-6, and TNF-alpha, all of which raise cortisol levels.[31-32]
• Several of the diseasesi linked to CPN-obesity, diabetes, stroke, cardiovascular disease-are also linked to high cortisol levels. " 

It's unbelieveable that even the DEAD CPN can affect the cortisol levels -- appears we have a serious challenge.....

I thought I would post this even though I'm sure some of you already knew this from reading the PBS book..

Jeanne: Diagnosed 4/2007 w/ CPN, HHV6, EBVi, FM,CFIDSi; prior bronchitis/sinus; kidney infections; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism/Azith 250, 1x/wk/ 5/27/07- Doxyi 100mg/day, increasing slowly, supplementsi

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

It's very interesting to read about these adrenal issues. I was diagnosed with hyothyroidsim about 10 years ago . One of the striking things about it is that after all this time my meds still have to be adjusted. I have also always had low blood pressure and low body temp. I also have intractible , unbudgeable belly fat , neck fat etc. I was hopin to emerge in 2 years a slim goddess but after reading the belly fat book, i guess i will settle (gratefuly) for energetic healthy goddess. I cont to be amazed at the diff comglomerartion of symptoms that abxi brings. this cp must be freaking everywhere in me!! i don't know if my signiture willl post or not. stratton protocol about 2 mos.    lisa lea

Yes, I find this belly fat strange. It came on suddenly in the past year as I was actually feeling better and regaining my strength. Now that I have started CAPi it seems to be getting worse. Sit-ups and the little weight exercise I can do seem to do nothing. I appear fit, but there is a definite concentration of fat around the belly (and bloating full feeling all the time) and sides and into the buttox. very strange areas for fat in a relatively young man to come on suddenly. You would think the abxi therapy would be relieving the problem as DW noted it did for him. For me it is the opposite. Hopefully I will swing in the other direction as I progress in CAP. My diet is mostly healthy whole grains (brown rice, wild rice), raw vegies, lean protein and some fruit. No sugar except for some chocolate here and there. No junk. I also have a very strange feeling in my mouth since starting CAP. Metallic, strange taste, as if my teeth are always dirty or I haven't brushed them. Other symptoms are mostly fatigue in the AM, late afternoon and some neuroi mild disorientation, anxiety and strange thinking/behavior. Almost as if I am watching a film, but rather it is life instead. Does anyone know what I mean??? Best, Chris CAP since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Minocin !00mg MWF (working my way up). All supplementsi.

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CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

Cortisol Bellies

With reference to your statement below Christian.....

"You would think the abxiii therapy would be relieving the problem as DW noted it did for him. For me it is the oppositeJ"

That's why I posted the above information.  If I am understanding it correctly -- It appears that CPN causes adrenal problems, adrenal problems cause cortisol problems, cortisol causes the excess belly fat. (Plus insulin/liver problems.)

The FACT that CPN thrives in a high cortisol level as well as the CPN STILL has an  effect in the die-off (or even the dead CPN cells mess with the cortisol), would lead me to believe that we may not get rid of these cortisol bellies until we get the CPN completely out of our bodies!

Not to keep "parroting" you ,  but I have noticed  my teeth always feeling like they've not been brushed -- it drives me crazy. 

And yes, I am experiencing the disorientation issues as well .. starting my 3rd week of ABX (with only doxyi and not up to full dosage yet)

 Blessed and well,

Jeanne: Diagnosed 4/2007 w/ CPN, HHV6, EBVi, FM,CFIDSi; prior bronchitis/sinus; kidney infectionsi; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism/Azith 250, 1x/wk/ 5/27/07- Doxy 100mg/day, increasing slowly, suppl

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

The bad taste, anxiety/disorientation, and weight gain were things I experienced too. They went away once I'd been on the antibiotic for a couple of months. But in your case, according to your signature, you're 'building up' via pulsing, which is likely not to shut the Cpni down completely; so you might have these symptoms much longer. You can't do the CAPi and the Marshall Protocol at the same time; you are going to have to choose. I recommend picking the one that doesn't ban failed patients from its forum.

The anxiety and disorientation, by the way, is most probably porphyriai messing with your mind.

(I should clarify, as regards weight gain, that in my case I didn't lose the weight I'd gained at first; but I did stop gaining more.)

Norman (or anyone of you experienced CAPi'ers)

re: " You can't do the CAP and the Marshall Protocol at the same time; you are going to have to choose. I recommend picking the one that doesn't ban failed patients from its forum." 

 I'm not sure who this was directed at; but,.....

I started doxyi @ 100mg/day for a week; then I started  taking 200mg. doxy on MWF and 100 on TTR -- I thought this was an acceptable way to build up my tolerance.  Is this considered pulsing? 

I can't tolerate 200mg/day yet

Thanks for explaining this.

Jeanne: Diagnosed 4/2007 w/ CPNi, HHV6, EBVi, FM,CFIDSi; prior bronchitis/sinus; kidney infectionsi; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism/Azith 250, 1x/wk/ 5/27/07- Doxy 100mg/day, increasing slowly, suppl

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

Well... ordinarily, pulsing, as I understand it, means any therapy that's not identical from day to day over it's entire course. But doxyi generally has a serum half-life of 18-22 hours, according to wikipedia. Using that figure, if you take 100 mg one day and 200 the next day, and keep repeating that, the fluctuations in your serum concentration are not very significant by my way of thinking.

However, it seems you aren't taking any doxy on saturdays or sundays. That I probably would call pulsing, as your serum concentration will fall ~5-fold over the weekend. Why do that?

(Note that serum half-lives for some drugs may vary somewhat depending on factors like gender, individuality, intake of other drugs, etc.)

Eric, thanks.. I AM taking doxyi EVERY day, Brain fog here... I just looked at my tracking calendar:

Sun/100mg/Mon.200mg/Tues.100mg/Wed.200mg./Thurs.100 mg/Frid.200mg/Sat.100mg.

Sooo, I guess I am not pulsing?

As I stated I am starting my 3rd week (I had a full week of 100 mg/day and this will be the 2nd week alternative the dosage)

 

 

Jeanne: Diagnosed 4/2007 w/ CPNi, HHV6, EBVi, FM,CFIDSi; prior bronchitis/sinus; kidney infectionsi; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism/Azith 250, 1x/wk/ 5/27/07- Doxy 100mg/day, increasing slowly, supplementsi

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

Hi Jeanne,

On this site we often refer to the time when we take the Flagyli, the third antibiotic, as a pulse.   That is because  as Eric explained above we don't take it every day.

As you explained you are working up to a full dose of Doxycycline, so not doing a pulse as we use the term here.   It would be unadvisable to pulse Doxycycline, but building up to a full dose in the way you are doing is a good way to manage your reactions to it.

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi 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

Michele, thank you for clarifying this.... I was beginning to doubt myself! 

Jeanne: Diagnosed 4/2007 w/ CPNi, HHV6, EBVi, FM,CFIDSi; prior bronchitis/sinus; kidney infectionsi; food allergies; hypothyroid (RAI for Graves in 1998) ]; hypoadrenalism/Azith 250, 1x/wk/ 5/27/07- Doxyi 100mg/day, increasing slowly, suppl

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JeanneRoz~CPNi diagnosed & started protocol  4/2007, also HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.  3RD pulse 7/7/2008=500 mgTINI:4day

Sorry for the ambiguity; that part of my post was directed at Chris, who is taking minocycline three times a week, and who has mentioned the Marshall Protocol a lot. (The half-life of minocycline, by the way, can be less than that of doxycycline -- in some people, it's 11 hours -- which makes it better to take twice a day.)

Yes, Norman, working my way up. Not pulsing. Stratton even says it in his article. If you cannot tolerate daily, begin with 1 Zithi a week, then 2, then 3 etc... Chris CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Minocin !00mg MWF (working my way up). All supplementsi.

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CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

But Zithromax has a half-life of three days, so taking it once a week can be like taking minocycline once a day, in terms of the ratio between maximum and minimum blood levels (although that's not necessarily the case; in some people the half-life of minocycline is twice that in others). What you're doing is what a lot of people call pulsing. I don't think there's much problem with it, if you can handle the die-off effects. But you started the thread by complaining of them; and if your minocycline capsules are anything like mine, it's not hard to open them up and divide the dose in half or in quarters, so as to achieve a more constant blood level.

Blessings Jeanne,

I too have thyroid, adrenal, petuitary dysfunction.  Unfortunately, I have in the past year, gained some weight & that front butt!  My entire life I had a flat fit tummy, even after my daughter.

Interesting post.  Thanks

Ruth

CFIDSi/ME, FMSi, IBSi, EBVi, Cpni (375 mg Metroi, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, NAC 1 gm

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08

My Dr. follows the Dr. Brown Road Back protocol. He has been treating patients with Cpni and Mycoplasma infectionsi for almost 20yrs. He still believes in 200mg Minocin MWF and 500 Zithi Tues, Thurs. He believes you still acheive the proper blood levels of Minocin at 200mg every other day (100mg in am, 100mg pm). Many of his patients are in remission and off the abxi after a few years. Say's their blood tests all fall into normal range after a while. I trust him, but have given him the latest Wheldon/Stratton treatments. Am working on convincing him to add tinii for me. Best, Chris CAPi since 11/06 for CFSi. Cpn, Myco P, CMV, HHV-6 infections. Minocin 100mg every other day. (working my way up). All supplementsi.

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CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

That sort of pulsing was likely the best treatment around, before Stratton found that metronidazolei killed the cryptic formi of Cpni. I've read Dr. Brown's book, but wasn't much impressed by his reasons for pulsing: clearly he'd found that it worked better than a more frequent dose, but it didn't seem like he really knew why. But looking at the life cycle of Cpn reveals one way it could work: with a constant dose of antibioticsi, the bacterium just goes into the cryptic form and stays there, whereas with pulsing it repeatedly wakes up and then gets shut down -- and each time it shuts down, it has a chance of getting killed rather than shutting down successfully. In the case of Cpn, when one uses metronidazole, one doesn't have to play that game any more; one can just shut it down then kill it in the shut-down state. This is a better solution, since it doesn't leave any time during which the bacteria are awake and causing mischief.

(It's possible, though, that you're dealing largely with something other than Cpn. Pulsing has been found to work against some bacteria that persist in biofilms. Theirs is an entirely different lifestyle from Cpn's -- extracellular, and in big colonies with lots of infrastructure (the goop of the "biofilm") -- but the basic idea is very similar: the initial dose of antibiotics kills most of the bacteria, but leaves alive some "persisters", which are in a shut-down state. If the dose of antibiotics is maintained, the persisters stay shut down; then they awaken once the antibiotics are withdrawn. If at that point you hammer them again with antibiotics, you kill them too.)