Cpnhelp.org - Chlamydia Pneumoniae Treatment

Its good to know that he is holding his own even if his personality occasionally takes a turn for the worse.   I look forward to hearing the results of the MRIs.

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

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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

Thanks for the update Joyce & Jim,

I look forward to hearing about the MRI. 

Blessings

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 7th pulse 2 X 375 mg 2day+

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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

Joyce -

Understand about the MRI's. 

I am holding up adding or changing anything right now (attempting to titrate down steriods, adding Tindamax, etc...) with my husband since he has a MRI in about 10 days.   I keep thinking - will it change anything we are doing - based on the results of the MRI ?  Since the answer is no - I am not sure what I am worried about? 

Here's hoping Steve's MRI's all are good to go for ramping up the protocol and seeing some positive benefits!

^{Daisy - Husband on CAPi 5/07.  Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli}

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Joyce, what a relief to hear that Steve is doing ok. Interesting about the Doxyi three times a day.

 

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 49 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

Thanks gal pals.  Rica, I was very surprised that he had such definite die-off reactions to adding the 3rd dose of doxyi per day after having been on the CAPi since August '06.

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

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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. 

Good going, Joyce! His personality will recover, too.

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

Joyce, I have recently changed to Doxyi once a day 200mg instead of twice at day at 100 mg. and for me Ihave experienced die off generally about 6 hours after taking the dose it seems.  Doxy is wonderfully powerful drug. Back in June, I was on 200mg twice a day and die off was happening in a major way.  This may be  for me a reflection of the B burgdorferi die off as it often consists of chills when the room is at 74 degrees!  No fever really last night, I was down to 96.7 F with those chills.   Still my mornings are easier, supplementsi of Calcium/Magnesium/Selenium are not in conflict, so for a while I will keep taking the doxy in this way, I do maintain my Roxi on the twice a day dosing. 

I need to pulse again to get after the CPni and the Bb. Just got my final results of all the extensive liver screening tests and my liver elevations are not viral in origin, nor cacerous, so that is quite a relief.  And the liver enzymes are beginning to trend downward too.  Waiting for results of any testing is very tedious and from my perspective brings on my latent bad mood tendencies

Waiting to hear the continuation of plan changes and the results of the testing.

I so admire that he is able to continue to work during this treatment.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. 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 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Joyce, Thanks for update - looking forward to MRI report and testing. Great that he was able to do 8 day pulse and work! 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.

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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

Thanks girlfriends.  Since posting this update, Steve has cut back one more pill on his betaine HCl---he had to take 6 in the beginning, now it's just 2.  And a really wonderful thing happened this morning; his balance is better than it's been in 2 years.  I'm celebrating this with y'all, because he's being a wet blanket about it (afraid it will disappear never to return).

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. 

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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. 

Hip Hip Hooray!!!!!! 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.

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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

Joyce, When my left'side weakness abated, I tested it repeatedly, thinking surely it was a phase. I understand being afraid to believe. He'll adjust, just like he learned to compensate when things declined. This is great news!

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

Steve is now down to just one betaine HCl per meal.  I consider this a major success.  The MRI reports are in, and I need help understanding what they mean.

Brain findings:  Throughout the periventricular white matter, including around the temporal and occipital horns, there are confluent patches of abnormal T2 hyperintensity.  Several discrete lesions within this have the ovoid shape and perpendicular orientation to the ventricular surface that is typical of multiple sclerosis plaques.  None of these lesions enhances after contrast administration.  Many of them are dark on T1-weighted images, most conspicuously in the right periatrial region.  (are these black holes?)

The midbrain, pons and medulla contain multiple ill-defined subcentimeter areas of T2 hyperintensity.  These are most prominent on the left.  None of these lesions enhances after contrast administration, but most are dark on T1-weighted images. 

There is minimal overall prominence of the third and lateral ventricles, indicating slight loss of brain volume.  This is not grossly out of proportion to the patient's age.  There is slight thinning of the corpus callosum body.  The remainder of the study is normal, including all visible parts of the face and upper neck.

Impression:  Confluent cerebral, midbrain and brainstem white matter lesions consistent with multiple sclerosis, unchanged since 2-28-05.  No evidence of active demyelinationi at this time.  Minimal atrophy of corpus callosum, unchanged. 

That was only one of 4 MRIs.  The cervical spine MRI report repeated the bit about the pons and medulla and added this:  There is no abnormal contrast enhancement or evidence of a demyelinating plaque.  On several sequences, there are ill-defined areas of abnormal signal, but none can be seen in more than one plane or on more than one sequence, suggesting that they are artifacts.

That's enough MRI reporting for today.  Tomorrow, I'll post the thoracic MRI and the abdominal MRI results.  Thanks for taking the time to sniff Steve's dirty underwear.

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. 

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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. 

Someone else will hopefully chime in here on your black hole question as I do not know but overall this is a great report - showing no active disease and no new lesions when compared to scan done in 2005. Congratulations Joyce and Steve and thanks for posting! 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.

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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

 Joyce -

 MRI knowledge is not my best subject but I believe that dark lesions (aka hypointense) can be two things - 1) black holes meaning permanent damage and 2) edema in area of lesions which may disappear on subsequent scans.  I am hoping it's #2 !

Since Steve is SPMSi it's not surprising that he doesn't enhance so I wouldn't read to much into that.  You probably need to compare this one to last.

I have been sitting all afternoon looking on my husband's MRI disk from yesterday Vs the last one.  Tomorrow we see neuroi and I am going to let him interrpret. 

Hoping for the best for you guys!

^{Daisy - Husband on CAPi 5/07.  Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli}

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

I doubt it's edema; edema would enhance with gadolinium, and his lesions aren't doing that.

Why would SPMSi mean no enhancement? I'd think it'd mean unceasing enhancement.

Norman - I was going by thie definition below that I got from a med text book earlier today as I was trying to deciper the MRI disk my husband had yesterday.  I freely admit this isn't my area at all -  Hope to learn more about this tomorrow at my husband's 3 month neuroi appt.

"Signal in MR images is high or low (bright or dark), depending on the pulse sequence used, and the type of tissue in the image. The following tables are a general guide to how tissue appears on T1- or T2- weighted images.

^{Dark on T1-weighted image:}
• ^{increased water, as in edema, tumor, infarction, inflammationi, infection, hemorrhage (hyperacute or chronic)}
• ^{low proton density, calcification}
• ^{flow void}

^{Bright on T1-weighted image:}
• ^fat
• ^{subacute hemorrhage}
• ^melanin
• ^{protein-rich fluid}
• ^{slowly flowing blood}
• ^{paramagnetic substances: gadolinium, manganese, copper}
• ^{calcification (rarely)}
• ^{laminar necrosisi of cerebral infarction}

^{Bright on T2-weighted image:}
• ^{increased water, as in edema, tumor, infarction, inflammation, infection, subdural collection}
• ^{methemoglobin (extracellular) in subacute hemorrhage}

^{Dark on T2- weighted image:}
• ^{low proton density, calcification, fibrous tissue}
• ^{paramagnetic substances: deoxyhemoglobin, methemoglobin (intracellulari), iron, ferritin, hemosiderin, melanin}
• ^{protein-rich fluid}
• ^{flow void}

 

 

 One other interesting thing I learned recently is that porphyriai alone can cause brain lesions on MRI as well as a bevy of other MSi like symptoms. 

The deeper I dig the less I know :) 

^{Daisy - Husband on CAPi 5/07.  Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli}

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

What the gadolinium does, from the bloodstream, is to leak into areas which are inflamed -- which, I think, would include edematous areas, edema being swelling and leakiness of tissue.

From that list, porphyrins would seem to fall into a class of things (paramagnetic substances) that make the T2 signal darker, whereas MSi lesions usually yield bright spots on T2. That would mean that porphyrins, if present in large enough quantities to seriously affect the signal, would counteract the usual T2 brightening. But you may not mean that porphyrins themselves are visible, but rather their effects?

In any case, this paper does talk about gadolinium enhancement in SPMSi (although it seems not to be universal), so the lack of it is definitely encouraging.