Cpnhelp.org - Chlamydia Pneumoniae Treatment

KK2, so sorry to hear that you are having such a hard time.   You do sound as if your are suffering from a great deal of inflammationi, is there nothing your doctor will prescribe to reduce it a bit.   And of course there is always the possibility of porphyriai, especially as you complain of gut ache.

What is your body temperature like? Are you still feverish and in pain.  You sound very much like Ella was when she was ill.   Anorexic, nauseous, weak, fatigued and unable to lift her legs. 

Three things that I arranged to help Ella recover were

1. Steroids for the inflammation

2. Questran for the porphyria

3. Fluconazole for yeast infection.

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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

KK2- I too have followed your recent bout with concern. I'm taking a break from the pyruvate myself because after appearing to improve things it seemed to be confusing the issue. Dr. Stratton suggested I take a break from it and try pulsing it for a week once a month which I'll try soon.

That said, I want to echo Michelle's suggestions: your depression, nausea, low appetite and low energy sound very much porphyrin related, and it would be good to have a go at some regular cholestyramine to see if this improves it. I found the Biaxin/Pyruvate combo very hard hitting, and Roxithromycin/Pyruvate kinder to my system. I also think that for MSi folks, hitting the Cpni hard may require judicious use of prednisone to modulate brain inflammationi. We still don't know the exact balance of this: is it better to hit it with a larger dose once or take a low-dose regularly during times one is grading up the CAPi, but if one dose pulls you out of a set of your reactions, you might then know that inflammation is a big culprit here.

Sorting out these multiple causes of inflammation, porphyriai, hitting it too hard too fast seem the main points here to me. You can't judge things clearly when you are also significantly depressed so I'm glad you have the Wellbutrin as a support to boost energy and mood while you are working through this phase of the CAP. As a mental health professional I hear your thoughts of "slipping away" as depressive ruminations, and only want to remind you that they are a function of the mood, i.e. depressed viewpoint, and not of what's literally true about your life. Change the mood and you might see these same "facts" differently.

Like you, my CAP has not been in a straight line-- both due to my condition and due to my own experimenting over time. I get rather jealous of those who get into the CAP and report those steady, linear improvements, although I'm delighted to see the evidence for our approach. But why not me? Add in more whining and complaining here, you know the stuff. As Dr. Powell notes, this thing is multi-faceted, and many of us may have more than one thing going on, more than one organism. For some the whole thing is straightforward, for others we have to build a more complex framework of treatment. 

Related to that, I'm increasingly suspicious that iodine depletion and bromine dominance may be a contributor in many of the difficult to treat Cpn cases. This seems especially true when fatigue is a dominant symptom. You might consider some the information about this and a trial of Iodoral, being careful about bromine detox.

http://www.breastcancerchoices.org/iodineindex.html

 

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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

KK2 - Agreed. I'd be looking to push the toxic remains of your huge die-off out of your body and brain. Make room for some healthy cells and thoughts to take their place. Your great husband and kids will NOT end up alone! That's just the 'too much free time' part of your brain talking. You really ARE going to make it through this!

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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

KitKat2, Inflammationi seems to be the problem as others have pointed out.Also heed Jim's advice about the Iodoral. It made a huge difference for me in the energy dept.It is also antiviral and antibacterial at higher levels.I have heard that one of the iodine docs is using 100 mgs with B2 and B3 for infectionsi. As for the inflammation, after taking Pyruvate for over a month and adding green tea my last two Flagyli pulses were full of inflammation in areas I thought had been scoured of Cpni.This is after almost 3 years of the CAPi. And multiple infections are certainly a big part of the deal as Dr. Powell points out. Hang in there.

Some remedies for porphyriai and inflammation that help me are:

Berries--all kinds especially blueberries for the brain

Drinking lots of water with lemon and D-Ribose mixed in

Deep breathing

Fresh carrot juice--make sure it is organic

Exercise --even if you think you can't--Tai Chi, Yoga and Qui Dong are good for being modified for ability. Check out this site about Yoga for MS by Eric Small: http://yogams.com/

Keep the faith--you have some incredible researchers on your side,

Raven 

CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS 

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Feeling 98% well and going for 100! Still testing + for Cpni since June '08.CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi. Also EBVi and HHV6 NACi, Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi and Methylation supplementsi

Jim,

 

Thanks for the link.  I have been meaning to try the Iodoral.  After watching Dr Brownstein's video[link], I am more convinced it might help.  I grew up on the shores of Lake Superior, a location that he says has the lowest Iodine levels in the country.  I have had fibrocystic breasts as long as I can recall.  The way he mentions that thyroid and breasts compete for Iodine, and thyroid always "wins", at the expense of the breasts makes sense.  Also the deficiency being related to compromised immunei function is interesting to note.

Off now to do my research on bromine detox, etc..

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Hi KK2, So sorry things are so hard right now. I would get that script for in home PT as they could give you stretches and some strengthening exercises. It will be hard but it will give you something back - at least it does me. You will get out of this - I wish I could tell you when. Those boys really need you so don't even think about slipping as maybe right now you can't be there for them as you would like to be but you will be later. I also got a yoga tape and LOVE it. My tape tells me to sit on edge of chair and do exercises because I can't do those pretzel type moves - even the breathing exercises would help you now. Hang on and Take Care.

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On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Hi KK2! Man, you are being brave and good for you! It takes courage to hope doesn't it? I bet you'll do better once you do all these new measures to decrease inflammationi. Do go for the yoga tapes I have one and it is great. anything at all you can do to exercise is good. I find I get a lot of good out of things that would not seem to help, like doing my level best to do Denise AUstin's morning workout even though it is like frankenstein trying to do the dance of the sugarplum fairy, but oddly it seems to wake some things up and makes getting around a little better. blessings marie

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

KK

I hope you are doing much better very soon.  There are lots of good comments to help you come through this.  Have you ever tried Inositol for depression, it works for me regularly taken & then pulsing I increase it by one capsule when I start feeling down due to the toxins from die off.

Do what you can, you will make it through this & be better for it.  Others have, so keep on your tenacity& pitbull with lipstick attitude!  These sxi will pass!

I am praying for you.

 

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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

Kathy, there is a combination, cardiologists call it "awesome foursome" that includes magnesium 400-800 mg, ubiquinol 200-400 mg, D-ribose 5 gm three times a day and acetyl-L carnitine 500-1500 mg daily. Ribose is very important, no effects without it. It provides energy to a heart and a body. Wish you the best B.

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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.

Thanks, Lifeontheice, I googled and found this example of an ubiquinol supplement, the write up about it seems informative; http://www.biosynergy.com/Ubiquinol.htm.   Think I may change from CoQ-10 to the form you suggested above. 

Hi KK, hope each day is ever more hopeful, in faith and hope.  Louise

 

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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 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

kk2,  You've received several helpful and supportive comments.  I prayed for you today at a shrine, and I will continue to keep you in my prayers.  Bless you,

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

I appreciate all the advice and helpful comments.  Thanks everyone!  I should update my profile to reflect the fact that I have been off abxi now for nearly three weeks in order to recover more quickly from the extended porphyriai state in which I was entrenched.    This has helped much more than I could possibly have imagined!  My legs are still stiff and balance/gait issues continue, but the fever and gi issues are finally gone. 

 

I can only hope and pray that my previous independence will return, if not be mildly improved??  Am I being too optimistic?  After all, it seems to me that all that suffering should at least render a slightly improved state, no?

 

Joyce, I appreciate your prayers very much. You two are in mine as well.  Thank you so much for thinking of me.  :)

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.