Cpnhelp.org - Chlamydia Pneumoniae Treatment

My appt is on Friday morning (not my best time of the day) and I've printed out a few papers I think will be helpful. One woman I talk with had given me a link to her Dr's paper who is using CAPi on her in FL.

Here's an excerpt and a link although you may need to be a member to view the full article:  

Sep 28, 2005

Tampa, FL - Psoriasis occurring in patients with chronic arthritic conditions treated with TNF inhibitors has been described as an adverse effect of these drugs?a paradoxical side effect, because TNF inhibitors have documented benefit in the treatment of psoriasis. But are these skin lesions really psoriasis? A more plausible explanation for these observations may exist, says US rheumatologist Dr John Carter (University of South Florida, Tampa).

...TNF inhibition is known to increase risk of infection and to unmask latent infectionsi, Carter points out. The latter has been well documented in the case of tuberculosis following reactivation of the persistent obligate intracellulari bacteria Mycobacterium tuberculosis. Interestingly, C trachomatis and Chlamydia pneumoniae are also persistent obligate intracellular bacteria, and chlamydia is a known cause of KB in the setting of ReA.

Carter suggests that psoriasis described as an adverse effect could be new exposure to these causative organisms or reactivation of the persistent state. TNF inhibition would increase the risk of becoming symptomatic in either scenario. "This would also explain why the skin lesions resolved after stopping the medication," he adds...

 

Hopefully, this will be enough along with the rest of the info I'm presenting to him to rx the CAP for me.  

If you have any other suggestions/ideas, please feel free.  TIA

 

MP for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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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!  

Doxycycline, even long-term, is NOT a dangerous drug. Azithromycin at 250mg MWF in conjunction is the very basic foundation or our regimen. You are responsible for the supplementsi. My doctor was skeptical at the beginning and when I was in for a regular checkup several years later with my list of supps, intending to read them off to the nurse, he just kept the list for himself. I hadn't told him of all the supps - I just took them.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

Rica,

The dermatologist I'm seeing has been my derm now for years and years and has had me on all sorts of heavy duty immuno suppressives and although abxi are alot less harmful, I still have my doubts I'll walk out of there with the rx's.

But, I'm going to try and I'm going to try to be positive. I'm mainly wanting the rx for minoi (would rather take than doxyi) Zithi (although I still have some left from MPi) and maybe Tinii as I'm not sure I want to take Flagyli.

I'm noticing folks using Questran too so was wondering if that's another rx I'll want to ask for, if he's willing to rx me the abxi?

OTOH, if he refuses the total CAPi, I may ask him if he'd at least be willing to give me the rx for the mino (that's a pretty common rx for skin conditions) and then I can figure out a way to get the other rx's.

I have an rx here for demeclocycline which would be more than enough for a year but when I asked about it at one point I think I was steered away from it. Does anyone know if I could take the deme instead of mino? I think at one point Sarah replied with a quote from Wikipedia but the more I researched it, the more I believe deme is very similar to mino and doxy and could be used.

That would mean even without a Dr on board, I prob have most of the abx I need already! I would just need the batricidal ie: Tini or Flagyl.

MP for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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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!  

And you have a few months before you need the killers. I can't help you with the other stuff, but I will send positive thoughts. Hoard anything that you can and then when the time is right - all together now!

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

Update on the derm visit...

Well, he didn't say yes (for rx'ing CAPi) but he didn't say no, and he made that perfectly clear, literally, before I left.

I went to see my dermatologist with alot of new scattered breakout areas of psoriasis which are hard to treat topically.

The first thing the Dr said was, "we ought to think about putting you back on a systemic drug" and he was referring to a TNF-a inhibitor. But, when I explained to him about how there are findings of CPni in folks with psoriasis and PA and that I personally discussed it with Dr Stratton, he was still a little leery.

Long story short, the derm wants me to get tested first (even though I explained that it's hard to get a positive test for) and see the ID Dr before. Then, he said I ought to call him and we can go from there. I had told him I already tested positive for mycobacteria but that the CPn test was negative although this is quite common. He still wants me to get more tests done and get a consult from the ID Dr.

I felt he was putting me off but then again, maybe he wasn't? I mean, he really wanted me to know he wasn't totally opposed to rx'ing me the CAP and told me to hang on to the papers I showed him regarding the meds and doses and other info I shared with him.

I told him I was a little disappointed that he was willing to rx me an immuno suppressive drug even though I felt it was causing me more harm in the long run when there was another safer option which would help me heal my sick body. Naturally, I refused the rx for the TNF-a inhibitor and went with the topicals for the time being.

So, I'm back to waiting to see the ID Dr in 3 weeks. I was hoping I would be able to get the derm on board before then.

MPi for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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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, You still might, so we'll keep our fingers crossed for you. I think you were very brave in refusing the prescription he offered. You showed him your commitment to proceeding on the abxi protocol and that has GOT to have made an impression on him. Perhaps that will help sway him off the fence.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Mac,

Thanks for the encouragement and you may be right. I hope you are.

In the past, I was satisfied (and why I stuck with this derm thru the yrs) that this Dr always seemed to be up on the latest systemic treatments.

I've got some prayer warriors on alert for me and fingers and toes crossed.

MPi for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

___________________________________________________________

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, did you read this New Break post http://www.cpnhelp.org/new_break  .  You might find the prespective interesting.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#5 ended 4/24/08 Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Reenie, I pray you have planted the see which will sway this doc.  If not, on to Plan B.  I can't blame you for not wanting to go on the other drugs, keep on with the topical & for now, we wait.

blessings

CFIDSi/ME 26yrs, 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#9 750mg 5.5 day, 4-25-8

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Reenie, I've been on high potency topical steroids for over 40 years, covering my entire body from the top of my head to the soles of my feet at least once a week. I have chronic generalized 'eczema' -- a catch-all phrase which does not conjure what I live with. I have lousy skin which does not function as a barrier and full body rash that I must suppress with the steroid in order to wear clothes and have movement, or I'd go insane from the torture of it. I can say that I love steroids and that I hate steroids. More love than hate at this point though. I've tried systemic meds and have had life threatening side effects. I will not take them anymore, regardless. What I have won't kill me, those meds will.

I'm posting this to tell you that I get what you are experiencing, and to ask that you consider looking into single frequency light therapy -- and not the narrow band UV that is typically prescribed for inflammatory conditions. I use a large array with almost 2300 LEDs comprised of 660nm and 880nm. Simply put, these frequencies activate anti-inflammatory and healing processes within our tissue at the cellular level. LEDs have all the positive effects of low level laser therapy with the enhanced benefit of assured tissue safety. Here's a quick link to a broad overview with reknowned expert on the area of healing with single frequency light, Dr. Tiina Karu. And, here's a quick link to a study on TNFa reduction with LLLT. Here's a pic showing my stomach 20 hours after one treatment. I'd had the rash for about a year at the time and it is gone now. Hopefully this will intrigue you enough to consider looking into it. I have also found that using an all over application of metrocream (topical metronidazolei) very helpful in reducing the amount of steroid I require. I doubt that would be applicable, but you may want to check it out too... Of course, this is all of the beaten path.

Best wishes,
Corinna

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna,

Thanks for the links and the share but my main objective is to get on the CAPi which I believe will heal the immunei dysregulation which triggers the psoriasis outbreak.  

I'll be using the IR sauna treatment in addition to the other porphyrian measures and I think for now with all of the CAP provisions, I'll give that a chance to work on the skin first. 

 

MPi for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

___________________________________________________________

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!  

Of course, that was understood. My post offered a drug-free option for your short-term skin relief.  I know that I will still need to care for my immediate needs. I assumed this was also the case.

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May 2008. NACx1200mg, D3x2000mg, B12x1000mg. On the hunt for a doctor. Considering online Rx til then. Food/environmental allergies, chronic inflamation, eczema, long-term steroid use, secondary addisons, sinusitis/max. cysts, IBSi, FM, CF, TN, rosaceai, arthritis.

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.