Cpnhelp.org - Chlamydia Pneumoniae Treatment

Quite possibly, several people have reported extra anxiety both before treatment and when treatment starts.   Ella was very weepy, anxious and depressed when she first started the CAPi, she was very ill at the time, possibly in a similar condition to Paula although in Ella's case her diagnosis is MS.   This eventually resolves itself, although of course basic character traits remain.   Some people are more paranoid than others... But if this is an unusual trait for her it will get better.

Ruthless has attacks of the Troll queen, she calls them, when she becomes very angry and snaps at her loved one, this could be the same kind of thing expressed in a different way, I think she reported recently that she was more in control of these episodes now that she has been on the protocol for a while.

Michèle (UK) GFAi: Wheldon CAP 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

>Does porphyriai cause paranoia?

Absobloodylutley. Pardon my French, but thats an emphatic YES!

The physical sensation in the pit of the stomach is exactly the same feeling I get in end-stage porphyira (porphyrins in the gut?). Most of the symptoms of porphyria are psychiatric though - paranoia and emotional sensitivity being chief amongst them.

I can't take sucrose either (it exacerbates my cpni). And charcoal doesn't work too well for me (bungs me up), though it does seem to help others. Personally I take welchol. Be warned its expensive though. The alternative is cholestyramine. Those are probably the 2 strongest anti-porphyic measures you can take.

Killing the bacteria is (relatively) easy. Its dealing with the aftermath (mainly porphyria) which is the tricky part.

garcia. 

CFSi. Infected CPn 01-06. Started CAPi 03-07.
Currently: Roxi+Doxyi. 6 Pulses done. Welchol 2-4xday. Sauna every other day. D 7200IU

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Hunter: Don't think - experiment

Thanks Michelle & Garcia.

That's good to know.  I thought it was porphyriai.  I may get her to increase the charcoal to see if that helps.  We would rather not take welchol or cholestyramine at this stage.

Garcia, can you take glucose ok?

Mark 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan 08.

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UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

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 48 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 52 pulses LDNi NC USA

Mark, personally I can't take glucose either.

CFSi. Infected CPni 01-06. Started CAPi 03-07.
Currently: Roxi+Doxyi. 6 Pulses done. Welchol 2-4xday. Sauna every other day. D 7200IU

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Hunter: Don't think - experiment

 Mark,  I did not benefit from charcoal, welchol or chole. Sugar helped some. I found that D-Ribose helped tremendously with porphoyria from Flagy.  Here is the ingredients. I'm not sure if this would effect Paula's glycemia olr not.  

1500 mg tab has: total carb of 1.9 g, sugars of 1.8 g, d ribose of 1.5, and dextrose of 350mg.  I take 3000mg in AM. and depending on how I feel later in day, I might take 1500mg. The first week I took it, I required more than this. Then after about a week, I settled into the 3000mg in am and possibly 1500mg in afternoon. 

I order mine off of iherb.com. The name brand is NOW sports.  

Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f, estriol, progesterone, synthroid, and pulsing w/flagyli.

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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli, tinii<

Mark,

yes, the Troll Queen raises her head, caused by the CPni toxins secreted as I slayed them & they die!  Princess Troll - jeanneroz also experiences this. 

I had trouble with depression, anxiety & the turettes like comments (thinking who said that!!!) somewhat akin to demonic possession!!!. 

 Between glucose, EmergenC, Chitosan & at times charcoal I can keep the symptoms down to a little roar.

Hope this helps!  oh and lots of fluids

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, 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, 1-3-08 5th pulse 1 X 375 mg 4day

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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

 Mark- I add an "absolutely" that porphyriai can cause paranoia and psychosis-- these are often manifestations reported in severe genetic porphyria although less commonly reported here. Of course these can be due to other things.

You need 12 caps of charcoal 2-3x per day, and over time, to bring down such apparently high porphyrin levels. I know this is difficult to do, but the symptoms suggest it's really important right now and worth the trouble to figure out. If you don't want to try the other agents then you really have to use the charcoal to it's fullest to make sure you are getting the impact. There are powdered charcoal agents you can mix in water if this many caps is too difficult. Not tasty, but easier for some, and you can get a much larger dose in at one time more easily.  

CAP for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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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

 Mark- just noticed your other post on pain killers. Please note that paracetamols will increase workload on the liver which may also increase porphyriai. So take a look at any connection between liver-metabolized drugs she's taking and worsening of the porphyria episodes. As porphyria increases pain, you may be getting into a negative feedback cycle.

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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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

Thanks everyone.

Paula is only on Doxy at the min, but I think when her Neuralgia type pain has subsided, we will increase the Charcoal.  Her current pain is our priority at the minute.

She doesn't seem to be getting any relief from Paracetemol or Codeine, and so far (touch wood) after Turmeric, is a little better, so I don't think we have to worry about the workload on the liver you mention Jim.

Sharon, I am still gonna look into D-ribose as a replacement of Glucose since she has such bad reactions to glucose, but one step at a time is all I can handle. :-)

Thanks Troll Queen - I told Paula about your reactions to porphryia.  It's good to know that we are not alone.

Thanks everyone for your advice.  Who knows where we would be without it?

:-)

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxy Jan 08.

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UK Carer of bedridden Severe ME/CFS Feb06. CPNi dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

Is there another cause of anxiety from treatment such as a direct drug side effect? I have been having physical symptoms of anxiety (sweats, cold hands, increased heart rate, etc) but not the mental emotional symptoms since starting abxi. It seems to be mentioned a lot that porphryia is likely the cause but when I did a Google search the description of "porphryia" was something about a genetic disorder where you don't produce enough enzymes to process some-thing-or-other that causes skin and digestive problems. So it didn't seem to quite fit so I was wondering if it could just be a direct side effect of the abxi themselves?

Asthmai, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

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Asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.

There are two types of porphyriai, one genetic and one secondary that can results from treatment of gram negative bacteria. Read here for a great explanation by Jim.

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

Michele, what I found very interesting about genetic porphryia, is that a form of it may not show up until the 4th decade of life, say the late 40's or even 50's.  I know that the cholestyramine is helping me even more since I have started to take it daily at bedtime.  Also my down hill turn began to increase dramatically in the 4th decade of my life.  And I wonder and sometime may get tested.  Still I can treat porphoria more agressively and emperically.  And I am wanting to learn all I can about it in whatever form, as with most things personal interest is a great motivator.

Louise

CFSi/ME.

CPni positive.Bb positive.

6/24/07WheldonCAPstartedDoxy&NACi.

11/3/07Roxi150mgBIDadded.

11/22/07#2PulseTinidazole500mgBIDadded.

11/27/07CholestyraminePostPulse/PorphoriaSymptomsAdded.

1/15/08 Cont.Cholesty.atBedtimeForFatigue,Brainfog,mood.

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Louise   CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.

Hi Sharon, D-Ribose, supports and increases ATP (energy) production within the cells.  I know it worked for me with fatigue before going onto Antibiotic antireplicants.  It is great for fatigue and it not metabolized like simple sugars. First two to three weeks take 5 Gm three times a day then reduce to 5 Gm twice a day.

Louise

CFSi/ME.CPni positive.Bb positive.

6/24/07WheldonCAPstartedDoxy&NACi.

11/3/07Roxi150mgBIDadded.

11/22/07#2PulseTinidazole500mgBIDadded.

11/27/07CholestyraminePostPulse/PorphoriaSymptomsAdded.

1/15/08 Cont.Cholesty.atBedtimeForFatigue,Brainfog,mood.

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Louise   CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.

Mark, Please Check your inbox I have sent you and Paula a personal message.  Louise

CFSi/ME.CPni positive.Bb positive.

6/24/07WheldonCAPstartedDoxy&NACi.

11/3/07Roxi150mgBIDadded.

11/22/07#2PulseTinidazole500mgBIDadded.

11/27/07CholestyraminePostPulse/PorphoriaSymptomsAdded.

1/15/07Cont.Cholesty.atBedtimeForFatigue,Brainfog,mood.

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Louise   CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.

Ok, I'm convinced. Yesterday I felt so bad I thought I was going to die. I had another skull-crushing headache, physical anxiety (sweating, ice cold hands/fight, high bp and heart rate) and severe brain fog. It got progressively worse as the day went on. I realized about 6:00PM that I'd had almost no carbohydrates all day. I ate some and felt better within a couple hours. Today I made sure I ate plenty of healthy carbs throughout the day and felt SO much better all day. Coincidence?

Asthmai, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

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Asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.

Sunnivara, I found the same thing in my early CAPi experience.  For years taking carbohydrates alone was almost a sure thing that I would suffer a loss of energy, almost dramatic.  And I needed to cover or combine my carbos with protien and fat to keep and even state.  I found in early CAP that I needed and tolerated a higher proportion and sometimes Charbohydrate alone,  glucose tablets often relieved headaches and Seven-Up was helpful too.   I say no coincidenc.  I rely on glucose much less often now but I carry it in my purse and is on my supplement shelf ready for moments that I feel the need.    When you consider that the CPni is beginning to die of natural  apoptosisi because of the hold that the antibioticsi have on their influence over the cellular processes it has a general effect on may things.  

I say take it as needed and watch the tendency to excess lest you say gain unwanted and unneeded weight.   A little carbohydrate can go a longer way that we think, at least in my particular situation.

Louise        CFSi/ME.CPn positive.Bb positive.

6/24/07WheldonCAPstartedDoxy&NACi.

11/3/07Roxi150mgBIDadded.

11/22/07#2PulseTinidazole500mgBIDadded.

11/27/07CholestyraminePostPulse/PorphoriaSymptomsAdded.

1/15/08Cont.Cholesty.atBedtimeForFatigue,Brainfog,mood.

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Louise   CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.

My mom has diabetes so I have a paranoia of sugar and refined carbs like white flour. But it seemed slow-burning carbs like the black beans and sprouted whole grain bread that I ate yesterday worked well. It probably just didn't relieve the symptoms as fast if I'd had a shot of glucose. But I'm going to try to avoid getting into another die-off crisis in the first place by keeping a steady supply of slow-burn carbs coming throughout the day.

Asthmai, chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 started Azithromycin 1000mg/week.

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Asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.