Cpnhelp.org - Chlamydia Pneumoniae Treatment

Oh Mark, I am sorry things are not going well. You must get down and depressed at times like this. I guess all you can do is tie and knot and hang on at this point. Nothing anyone says is gonna make you feel like it's all OK but can I just say that I honor your commitment to care for Paula. My husband is away on a three day vacation and I am far from as ill as Paula but I sure miss having him around. I know that he will be a much happier man after he has been able to pursue his own hobby full time for a bit. I often wonder about the sacrifice that you guys make for us and whether I would be able to do what you do. From someone that is the recipient of care, bless you for your commitment Mark. You will get your reward someday. Until then, know that you have the respect of many people, certainly me!

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, starting flagyli slowly

Mark, I am so sorry to hear it. I don't have a thing to offer in terms of solutions, I'm afraid, but I'll add you and Paula to my prayers.

Ron

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

Mark,

I echo Todybear's appreciation of your committment.  You and my husband have much in common, sorry to say.  I, too, maximize my opportunities by brushing teeth, washing hair in sink, etc when energy dictates.  Why, it was just a few months back that I could climb stairs practically at will, shower standing up, and wall walk pretty well.[msi]  Of course, that was before I took Pyruvate.  Still recovering from that.

 

Though Paula and I are using CAPi to treat different ailments, the porphyrins still wreak havoc.   Neurotoxins have always been quite a nuisance for me and the secondary porphyriai can be so exponential and prolonged that one can easily begin to lose hope in any recovery at all. 

At the peak of the porphyria, nearly two months ago I felt horrid all the time--24/7. My symptoms were so extreme and debilitating that I thought surely I was dying.  Today, though my gait is still compromised,  I am mostly better. 

I hope you and Paula will gain hope from my situation.  That even when things seem  overwhelming and bleak, time and anti- porphyria measures will ultimately bring healing.  Take heart.

 

Please keep us posted.

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Began Wheldon Protocol for rrmsi October '05.  Currently OFF all abxi since June 26, '08 due to severe porphyriai. Added LDN 4.5mg qhs October '07.  All supplementsi.

Mark,hopefully this will pass. You might want to look into CoQ10 as a supplement for Paula to help her heart. Also check how much magnesium she is taking. Perhaps a little more would help. Here is an article about CoQ10:

http://tinyurl.com/6fuylh

Hang in there and take care of you also. Caregivers have a heavy burden. Hopefully things will improve with the treatment. Is Paula getting any physical therapy at home?

You are in my thoughts and prayers,

 

Raven

CAPi since 8-05 for Cpni and Mycoplasma P. for Msi and/or CFSi

Also EBVi and HHV6

 

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CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi Also EBVi and HHV6

Mark, it is really hard to know which way to turn when things get bad.   It has been my experience that things usually return to normal within a few day, or at least more normal than the recent past.   There is the fact that you are not around at night which increases Paula's anxiety levels which in itself can cause your heart to over react.

D ribose had no effect on Ella's energy levels either, so am not sure that you should continue paying out for this if it is not doing any thing for her.   It will be interesting to find out what the test reveal.   Thyroxine do have an effect on energy levels and adrenaline exhaustion can deplete your levels too.   You might ask Dr AW for a prescription for Questran which has proved effective for us in coping with porphyriai...

I think it was Red who suggested that low dose steroids help with the inflammationi, so also something to investigate.

Hang on in there... 

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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

Hi Mark,

I'm sorry to hear this. I don't have any experience with steroids so it must have been someone else...

I think Michele's advice about trying questran really makes sense though. If you can't talk your doc into it, and since Paula can't use Glucose, one other thing that seemed to work well for me was GliSODin. I used this brand:

http://www.vitacost.com/NSI-GliSODin-SOD-The-Antioxidant-Catalyst

I couldn't use charcoal as it seemed to make symptoms much worse for me, and I wasn't so sure about taking glucose continuously at the time (I've since changed my mind about this - but realize that not everyone can take it), so I had to go with the GliSODin. I took 2 (1000mg) each morning, and it really seemed to help give me energy, reduce nausea, aches and pains, etc - all what I now realize were symptoms of the secondary porphyriai.

I believe it mops up the reactive oxygen species (ROSi) that is produced by the porphyrins rather than having a direct effect in preventing the porphyria itself. It might be worth a try if all else fails. Here's some info on the role Superoxide Dismutase in Porphyria.   As you can see from the study, apparently our bodies try to produce it in spades in reaction to elevated porphyrins:

Response of glucose metabolism enzymes in an acute porphyria model. Role of reactive oxygen species.

Beware though if Paula has major problems with gluten. It contains wheat gliadin, but it didn't seem to bother me all that much even though I had wheat sensitivities before CAPi...

Hang in there. Make sure Paula drinks plenty of water to help try to flush the water soluble porphyrins out of her system...

 

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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07

Mark,  Try to put your unpleasant feelings about this episode aside.  It's probably not the last time something like that will happen, though I know your preventive efforts will minimize the risk.  Save your precious energy for emotions and actions that are positive and constructive; that's all you can afford.  She survived this time and she will the next.

The first time I witnessed my husband's heat-induced paralysis, my emotions turned me into "hamburger jelly."  Not any more.  Now when it happens, I get busy.  The result is that I now feel empowered because I know what to do.  This will happen for you too.

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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. 

Mark -

I am going through another dark time right now with my husband, so I may be know a little of how you feel.  In a word - b*ll*cks.  All I can say is hang in there!

Going through these crashes are what brings about better days for us.

I keep chanting this to myself every day as my husband is on day 23 of a Tindamax pulse .  I almost gave up yesterday and again today and stopped but I keep reasoning with myself we must pay now or later.  Might as well be now.  Keep telling myself to be brave and press on for there is no other good choice.

You have received a lot of good advice from the posters above hope you are able to achieve some relief.

I will throw this out there too.  Here in the US there are tons of "Help I have fallen and can't get up" services.  It's a little necklance or bracelt that disabled people wear that if they fall or get in trouble they can press the button and it will summon help.   You can program them to call emergency services or family members. or some of them have speakers that link to a phone speaker in the room so that Paula can direct the service to call whom ever she likes - you, ambulance, her physician, etc....  Since Paula is so disabled and alone much of the time, it might be worth it.  Just a thought...

Hang in there Mark, I am with you in spirit!

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

Hi Mark, I read here about "Tagamet" which is Cimetidine, to help the worst symptoms and tried it, and yes, it helps; I bought it at Walgreens, over the counter!  Hope it might help Paula too!!

Mark, because of the strength of the situation you have to start to see how can both of you can get stronger.  To better take care of her You need to sleep well, eat well and be full of energy.  I suggest for both the vitamin B-12, sublingual. 

About her exhaustion I see very good suggestions here and I wonder what is causing such weakness in her? Try to find the cause to be able to help her better. Has she had beta blockers for her heart? Give her the CoQ10 but consider talking with her Doctor to help her with that heart situation - I have suffered it a lot and the beta blockers have changed my routine; I think the worst of all  my symptoms is the heart problem because I get to the point of not being able to do anything! ... Try to stop that problem!

And I need to share my healing process when I found that all the infection was originated in my sinus and after using things to clean inside my nose, including the blessed "silver sinus nasal spray " - that kills bacteria and fungi - I am much better! I mean, try to find where is the problem located; look for the cause, and the cause of the cause!!!  It might mean the difference in the treatment and the healing process!! Do not surrender!

Please don't stop sharing the clean and dirty laundry; it is what keep us all gathered here and alive!!!!

Give yourself a little help too, so you can help her better! 

God Bless you all.

Maria. 

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MariaPatri

Thanks everyone for your comments.  Paula was a bit better this morning and I will find out when I get home, how her energy is doing (I am writing this from work).

I will read all of your advice properly very soon and try to digest it.  Many thanks to those of you who have pm'd me.  I will also read and digest those soon.

This site is the best.

Mark

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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, I am hugging you both right now.  You both are doing the best you can.  This process may well be the worst & best thing that could have happened to you.  Worst short term, best long term.

Having ME I am only too aware of the devastation of my energy supplies.  Over 2 years ago I had complete exhaustion & I know about getting things done in the bathroom.  This is a lonely illness for me.  Now after being out of the work force for over 2 years I have few friends.  I spend alot of time in the house, alone with my little best friend Stanley the Irish Terrier.  If it weren't for him.....well I just don't know.

Things are improving for me since getting the CAPi underway; now it has been over a year & pulse 13 starts tomorrow.

You are a good mate & I applaud your courage & determination.  There is light at the end of this tunnel & as MacK(?) once put it, it isn't a freight train.

Seek the good & you are both in my prayers.

r

 

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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, rest assured you're not the only one who has been banished. My sleeping patterns were appalling although they are now much improved. Harv snores for England so even when I could sleep, he woke me up. He now has to sleep in the second bedroom. Family think this is really weird but the fact is, you do what you have to do so that both of you can keep functioning.

You are doing a great job so hang on in there. At times it probably feels hopeless but it's not, whatever the outcome you're making a huge difference.

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Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

Hi Mark,  I have been thinking about you and this situation.....first of all, dont feel guilty.  you have to get sleep and stay healthy. you are 'no good' to paula or her daughter if you are sick. 

When thinking about this, 2 things come to my mind: 1) Paula needs to have a second game plan for situations when you may not be immediately available. 2) Also, maybe have limits on what she does when you are not there.  like: no hair washing since it takes too much of her energy, etc. 

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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<

Thanks Todybear & Ron for your support.

Mark

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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 kitkat2.  I believe that the majority of the CFSi symptoms that Paula has are due to porphyriai.  The d-ribose and activated charcoal do ease the mental issues.  I just hope that cholestyramine may help the physical.  What were you taking for your porpyhria?

But at the end of the day, she probably has a lot of porphyrins in her blood.  At least we are currently chipping away at it, bit by bit.  She has been on the Roxi for about 4 months now, and I wonder if she is suffering from more cpni die-off, causing more porphyrins.

You mention the problems that Pyruvate caused you.  Paula seems to get hit by the abxi more after she takes some ribose.

I am glad that you are starting to overcome your porphyria.

Mark

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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 Raven.  Paula is currently taking the dosage of magnesium recommended on this protocol.  She is also taking 60mgs of Q10 4 times per day.

Mark

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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 Michelle.  As I have said above, I think the ribose has helped Paula's porphyriai related mental problems, so she is taking it, like other people take glucose tabs.

All I need to do, is get some Cholestyramine and try to get her to take it, which may understandably be a hurdle in itself.

Mark

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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 Red.  Paula won't be able to try GliSODin as she is gluten intollerant.

Mark

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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 for your support Daisy and Maria.

Mark

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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 Ruth, Andesine and Sharon.

Paula has improved a bit since last week.  I keep reading about the improvements that other people on this site with CFSi have made, and it gives both of us hope - hope we just wouldn't have without cpnhelp.org

We are so grateful to you all.

Mark

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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.

You've probably thought of this already, but dry shampooing might extend the time between those exhausting showers?

 

Ron

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

Mark, I have found a form of GiSODin which is not gluten in origin but from a beef liver source and is enteric coated for maximum assimilation.  I am taking 1200mg per day.  50 tablets $10.35US locally Brand name is KAL established in 1932.  Th product name is S.O.D. 3 400 mg per tablet. 

It has been helpful and I am taking Calcium Pyruvate 3.75 Gm (5 capsules) 2 hours after a.m. abxi and 2.25 Gm later if the day fatigue is heavy.  I have also added  Sam-e 400 mg per day.  The Pyruvate power caps and Sam-e is from the wholehealth.com source.

These neutraceutical supplementsi seem to be bringing my energy to a more consistent and predicatable level.

Louise

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 Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3TID[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}