Cpnhelp.org - Chlamydia Pneumoniae Treatment

:-( 

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.

First of all the charcoal is not what has made her sick, the fact that she has still got it in her stomach after 7 hours may suggest that she is having some problems with her digestion.   

What else was in her stomach at the time she was sick, does she suffer from heartburn, what does she find difficult to digest.   Any or all of the answers to these questions might indicate what the problem is.   Once you know the problem it will be easier to find a solution.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 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, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Mind you, there is also a stomach bug going around.

Food staying that long in the stomach isn't right! Something else than charcoal going on here. Being in prone position all day isn't good for a lot of things, especially digestion which depends on gravity to help move things along. It's also not good for circulation, and only muscular action will move the lymph. So without any movement a lot of stuff stays stagnant in the lymph and circulatory systems and doesn't get cleared from the body.

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 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

The first year I was on CAPi, when I vomitted 5 hours after eating, the food was still there undigested. I think I remember that someone suggested that porphyrins can paralyze the stomach. Does anyone else remember this? Since we want the charcoal to get down to the bile duct, this is a problem. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Hi Mark & Paula.

ya, that doesn't sound good to have matter not cleared out of the stomach in 7 hours.

I know before I had a clue about food combining, this alone causes digestive issues - carbs with protein bad, carbs with veggies good, protein with veggies good.  (book, You are What you Eat) Is Paula taking digestive enzymes like WobenzymN, I take them 2 at a time, total about 8 a day; my Doc said you can take as many as you like throughout the day.  I read that about a tbsp of lemon juice in warm water first thing in the morning gets things moving & I practice this most days!  So does Vitamin C (it is also helpful with the toxins), when I think things are a bit stale after I ate carbs with protein for e.g. I down a few packets of Emergen C with water of course, & that gets things a rolling!

I know it is difficult to be inactive like this & have things working properly.  We just have to try to make up for it until we can be more active.  I understand not being to move & having no energy to even go to the crapper.  In time, this is going to change.

Blessings

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day

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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#11 1000 mg 5 days 6-14-08

Thanks everyone.  Just checking in quickly whilst at work.  When I get home tonight I'm gonna check with Paula everything she had to eat and double check the supplementsi.  Yesterday was the first time that she took 2 x 12 capsules of charcoal in a day.  Maybe she should cut down to 12 caps or even 8 caps once per day for the time being.  We are concerned in case the charcoal is drawing in more nutrients than we thought.

She did say that the charcoal was the very last thing she vomited up at the end of her retching and it did seem quite low down in her system. 

Her vomiting was caused by her mucal discharge that she still continues to get and is especially bad at the minute.

I need to do some reading up on this.

:-( 

 

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.

Mark,  What a good nurse you are. 

Paula, no fun vomitting and black vomit would be most disconcerting visually.  And I first thought before reading thorugh all the replys is that perhaps she has a stomach flu and digestion is shut down and not much is being digested.  The charcoal will always remain black where ever it is in the g.i. track.  and  you must have noticed stools are dark while one it.  It is inert and absorbs but is not absorbed. 

I will ask again about sitting upright in bed on a mound of pillows regularly is that happening at all these days?

How long on the Doxyi at this point?  Getting close to two months?  She is doing well with this it seems to me.   

And how about a short stint on the couch?   In the olden days of lesser refined surgery the patient would be progressed the C & B ( chair along side the bed) several times a day for brief periods.)  Sort of to bring people to the upright posture again.  

I was sick with either my post pulse response or a real viral upper resp infectiolast week. My non productive cough is almost gone.  Disappointing to be a few steps back.  It is par for the course of this treatment from what I can read here.

This protocol is not easy that is for sure.  However it is very potentially worth it. 

Even with my concernsI am so much better in general.  No as well as I can see myself being but I am progressing. 

I am hoping to avoid an enforced vacation from the protocol.  So I am here at a regional center talking to hepato-biliary specialists and surgeons.   I have finally allowed some blood testing that I have been resisting.  To be more sure about my sitaution.

Any change that Paula can try using your laptop to say a hello to us in person?  You know she would be warmly welcomed here.

Louise

CFSi/ME.CPnPositive.BbPositive.

WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. 

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences with an extra large glass of water.

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LouiseUSA. CFSi.WheldonCAP6/24/07. IntermittentCholestyramine 1-2 packets at HS with pulses &periodically as needed for porphoria&endotoxini. VitD-3,4000IU.Magnascent Iodine 8gtts/1-2x/day.

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Thanks everyone for your comments.

Paula has been on Doxyi now for just over a month.  She started the middle of January.

I know that her being in the prone position could be affecting her digestion - the problem is, that sitting up for any longer than 5 or 10 minutes massively increases her fatigue giving her breathlessness and at times chest pains.  (We had to get the emergency doctor in to check her over start of last year - he couldn't find anything wrong). This started happening about a couple of months before she became bedridden and is now much, much worse.

At the minute Paula (not wanting to be crude), uses a container by her bed to urinate and has a short walk once or twice per day to the bathroom for the "number two", when afterwards she has a wash and brushes her teeth ( she does everything in one go, to save energy).  We live in an upstairs flat (appartment) where the bathroom is only a few short steps from the bedroom.

In terms of the M.E/CFSi fatigue scale that is known about, Paula probably sits around the 10-15% point in my estimation.

In terms of using a laptop, she has trouble with a mobile phone at the minute, meaning that after 2 or 3 SMS texts, the energy in her hands and arms starts to go.  She is unable to read a book or any subtitles in a film.  After reading a couple of paragraphs of a magazine, her fatigue increases massively and she may "crash".

About half of the week, Paula hardly has enough energy to talk.  I have put a handsfree phone near her, to save energy, so she doesn't have to hold the phone and can just talk into it.  I had to set the phone up so it cuts off after 15 minutes, as she "runs out of puff" 10-15 mins into the conversation.  This I had to do nearly 2 years ago and it still stands now.

I am trying to get Paula to take D-Ribose that we have recently had delivered, to give her an energy boost, but as her fatigue has been a lot worse these past few weeks after starting the Doxy, she doesn't think she has enough spare energy in reserve if the D-Ribose causes a "crash". - I don't think it will cause a crash, but whenever she takes anything new, half the time she does seem to have a reaction to it.

I am sorry if I appear to be ranting, but I just wanted everyone to know the situation.

:-(

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.

Just as an aside to this:-

We are not holding our breath yet, but Paula now thinks what may be causing her mucal discharge (these last couple of days, it has been terrible - imagine going through sometimes 6 or 7 toilet rolls per day!)

Paula thinks it may be caused by salt or processed food.  She doesnt' have very much processed food stuff at all - mainly pease pudding, rice bread, baked beans, olives, pickled beetroot.  We are gonna cut out all these things - so far we have noticed a difference just today.

Just imagine, the energy consumed lifting your hands to your mouth to wipe mucas away avery few seconds when you do not have the energy.

I'll keep you all posted.

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.

Mark please continue to rant.  And please know we continue to from a place of caring.  Bravo that she has been on Doxyi and is past the one month mark.  That is major.   I did little during the early days of doxy.   And it is not unusual from what I have read here to be worse after the start of the protocol, I believe that you have read this.

D-ribose is metabolized differently that simple sugars so start slowly and I agree that it may be less likely to drop her blood sugar by increasing her insulin which is something that has happened to me in the past.

And it seems somewhat understandable that she is cautious about starting anything new.   Maybe even somewhat fearful.  Anxiety I have known and now wonder if porphoria has had a part for me for a good number of years.

It has been a revelation to me the phychological effects that can be atributable to iporphoria.  In the materials under the physicians page there is a list and the medication catigory benzodiazapines is said to be anti porphoretic in effect.  These medications have their challenges, however, used in moderation are very anti-anxiety.  I take a longer acting one only at night to prevent me from middle of the night waking and it helps me quite a bit and I am not in the least bit hung over in the morning.  Fear is an incapacitating emotion for me that is for sure.   Just some random thought for consideration.  You folks need to do whatever you need to do.  Years ago I would have thought that I would be very resistent to such help with sleep or or even to something like long term antibiotic therapy.  Now both of these therapies are very important to me.

Paula is still early into the therapy really.   You do what you need to do.  I hope that the D-ribose can be tolerated by her.   Have you considered just a bit of carbohydrate, I found that it was helpful early to pick me up mentally and physically in a very modest way, a very small amount of intake and and an increase of mental and physical energy a small but observable amount with some small degree of relief.

Blessing to you both,

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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LouiseUSA. CFSi.WheldonCAP6/24/07. IntermittentCholestyramine 1-2 packets at HS with pulses &periodically as needed for porphoria&endotoxini. VitD-3,4000IU.Magnascent Iodine 8gtts/1-2x/day.

Paula is in a unique position here, so we cannot assess her capabilities from afar, as we have no experience of it.   Suffice it to say that when her energy improves you are going to be the one that moves her forward.   It is going to be very hard for her to start taking risks again once she makes some progress, as her recent experience has been so horrendous.   When the time is right you will know what to do...

I found this on a  medhelp blog:

A high up type of reflux that doesn't cause heartburn, is called LPR/laryngeal pharyngeal reflux.

This LPR type of reflux, can irritate the tissues near the vocal cords, and the irritated tissues then produce more mucus. Even sinuses can be irritated by this high up type of gastric reflux.

Have you tried to keep a food diary, yet? This can help you to tell which foods you may be sensitive to. Food sensitivities (intolerances) are not the same as allergies. Food sensitivities can have delayed effects (minutes, hours, days). Food sensitivities can cause REFLUX, and then, the refluxthroat, sinuses, lungs, etc., with a lot more mucus production.Gastroesophageal reflux disease
Gastroesophageal reflux in infants
Hiatal hernia repair
Reflux nephropathy
Vesicoureteral refluxhover_boxes.hoverize_link('term_1747367_3', 'highlight_term')Gastroesophageal reflux disease
Heartburn
Heartburn preventionhover_boxes.hoverize_link('term_1747367_4', 'highlight_term')Cancer - throat or larynx
Laryngeal nerve damagehover_boxes.hoverize_link('term_1747367_5', 'highlight_term')Gastroesophageal reflux disease
Gastroesophageal reflux in infants
Hiatal hernia repair
Reflux nephropathy
Vesicoureteral refluxhover_boxes.hoverize_link('term_1747367_6', 'highlight_term')Gastroesophageal reflux disease
Gastroesophageal reflux in infants
Hiatal hernia repair
Reflux nephropathy
Vesicoureteral refluxhover_boxes.hoverize_link('term_1747367_7', 'highlight_term')Adjustable gastric banding
Culture - gastric tissue biopsy
Culture of gastric tissue biopsy
Gastric bypass
Gastric cancer
Gastric culture
Gastric suction
Gastric ulcer
Gastroparesis
Peptic ulcer
Pyloric stenosishover_boxes.hoverize_link('term_1747367_8', 'highlight_term')Gastroesophageal reflux disease
Gastroesophageal reflux in infants
Hiatal hernia repair
Reflux nephropathy
Vesicoureteral refluxhover_boxes.hoverize_link('term_1747367_9', 'highlight_term')Celiac disease - sprue
Gestational diabetes
Lactose intolerancehover_boxes.hoverize_link('term_1747367_13', 'highlight_term')Allergic rhinitis
Allergies
Allergies and genetics
Allergy testing
Allergy to mold - dander - dust
Drug allergies
Food allergieshover_boxes.hoverize_link('term_1747367_14', 'highlight_term')Gastroesophageal reflux disease
Gastroesophageal reflux in infants
Hiatal hernia repair
Reflux nephropathy
Vesicoureteral refluxhover_boxes.hoverize_link('term_1747367_15', 'highlight_term')Gastroesophageal reflux disease
Gastroesophageal reflux in infants
Hiatal hernia repair
Reflux nephropathy
Vesicoureteral refluxhover_boxes.hoverize_link('term_1747367_16', 'highlight_term')

 

I also found this article which  may explain things better.Cancer - throat or larynx
Throat swab culturehover_boxes.hoverize_link('term_1747367_17', 'highlight_term')Ards (acute respiratory distress syndrome)
Bronchoscopy with transbronchial biopsy
Chronic obstructive pulmonary disease
Coal worker's lungs - chest x-ray
Coal worker's pneumoconiosis
Collapsed lung, pneumothorax
Diaphragm and lungs
Heart-and-lung transplant
Incision for lung biopsy
Lung anatomy
Lung biopsyhover_boxes.hoverize_link('term_1747367_18', 'highlight_term')

 

Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 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, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Just a quick update on Paula.

Since eliminating the small amount of processed foods Paula eats, her mucal discharge has reduced by 50-70%.  It does make her diet very restricted as she is intollerant to dairy, soya, gluten anyway.  But she says she would rather have a boring time food wise, than have to put up with all the mucas.  She looks forward to her hot Indian takeaway every Friday.

Many years before Paula became bedridden, she cut out the dairy, soya and gluten and found that this reduced her fatigue by quite a margin - especially cutting out the gluten.

She does still feel nauseous at times these past few days, and we thought that her digestion problems may have been caused by the amount of olives she eats (these too were full of salt and did also have a small amount of lactose).

We have cut down her charcoal the past few days to 12 capsules once per day last thing at night.

So far, she doesn't seem to be having any other digestion issues like heartburn now.

Her fatigue has been a lot worse this past week and she is trying to start taking Vitamin E.  She has had a prob with Vit E supplementsi in the past (You would never believe how many supplementsi contain soya).  Most if not all vit E is derived from soya these days, but from conversations with the suppliers, there should be no soya proteins in the capsules, so she shouldn't have a reaction.

Once Paula has gotten used to the Vit E, she will give the D-Ribose a go.

She doesn't like to try new things on any day other than a weekend, to ensure I will be home if she has any reactions.

Thanks for everyone's kind words and support.  We are in this for the long haul.

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.

Just a quick question, as Paula is currently only taking 12 charcoal capsules per day, would it be better taking 6 twice per day, or 12 once per day?

Thanks,

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.

That is not something I find easy to answer.   It has to be taken about two hours away from any other medication, so that to a certain extent will dictate the pattern.   As it mops up everything not just liposome bound porphyrins it should be taken on an empty stomach.  I think (i'm no expert) that 6 is not is enough to do the job properly, so 12 once a day may be better.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 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, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Mark, my take is that Michele's answer would be my response to your question as well.

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. 

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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LouiseUSA. CFSi.WheldonCAP6/24/07. IntermittentCholestyramine 1-2 packets at HS with pulses &periodically as needed for porphoria&endotoxini. VitD-3,4000IU.Magnascent Iodine 8gtts/1-2x/day.

Efficiency is an important part of this - spendung 8 hours to do the same job that could be done in 4 is needless waste. Good question, though, in your search for the most thorough way. It appears that she can take 12 at one time, and since this takes only 4 precious hours, my vote goes on this side, too. I only did it 2x ONCE and it almost wreaked my day.

 

Rica PPMS EDSS 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 49 pulses NC USA

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Rica PPMS EDSS 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 51 pulses NC USA

Thanks everyone.

We will stick to the 12 caps once per day.

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.

Thanks Arttile.  I think we will stick to 12 caps of charcoal per day and maybe add the Chlorella.  When is it best to take the Chlorella?

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.

Hi mark, just wanted to agree with the poster who said porphria can cause stomach paralysis. I agree because i too have wretched for days on end and even weeks from it and have even upchucked potatoes that must have been in there a good full day at least.

Also, wanted to mention about the IBS drug di-cetel. Although its meant for irritable bowel, it does prevent bowel spasms regardless of the cause and ive used it to recover from wretching due to porpheria attacks in the past.

 

 

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBS neutropenia, pus found in facial bone, Doxy 100x2, zithro 250x1 alternate days. Metroi pulses each month.