First of all I’ve got to say that short of the post-operative pain period of a hysterectomy, this has got to be the worst few days of pain that I have experienced in my life. But secondly I’ve come to realise that some aspects of this most unpleasant experience are very positive.
It started innocently enough, a bit of a scratchy throat, some sneezing and some sinus involvement which lasted a few days and then suddenly, on Monday, it turned nasty: temperature of 39ᵒ Celsius, some three degrees higher than my normal. Tremendous headache and sinus pain, inflamed gut with constant severe pain in the lower left and right quadrants, most severe on the left. Could not eat, could not sleep, could not even take my meds, which in the end probably turned out to be a good thing. We tell and are told often enough to listen to our body, and this time I’m thankful I did even in my befuddled state of mind. Hamish tells me I was semi delirious at times, moaning and tossing from side to side.
As of today the balance sheet stands thus:
| BAD Pain in gut, head, joints, feet Weakness, delirium Chest and sinus involvement Enforced fasting Porphyriai Major sudden hair loss 48 hours without sleep Loss of working days
| GOOD Able to breathe through nose Cough productive Copious mucus discharge Lost 9 lbs Seen the effects of porphyria More effective immunei system |
I think the good column needs a bit of explaining, pre CAPi this kind of flu experience would result in weeks of not being able to breathe through my nose. Even at its worst I was able to breathe easily. After a few days the really yucky mucus discharge started but even that did not stop me breathing normally, same with the chest stuff… cough… up it came… and quiet again for twenty minutes, instead of incessant coughing with no result. The result of this effective clearing out system is that some 3 days later my system seems to have cleared to worst of it, instead of it dragging on for weeks.
The enforced fasting may have precipitated a porphyric attack which I think I was noticing building up before this all started. No carbs, no energy, no way for liver to process porphyrins, so a problems was created I could do little about. I tried taking some glucose, but all I could keep down or bear to swallow was water. Even than tasted foul. Once I was able to eat a little, my body started to react in the way it does after a Flagyl pulse, easing of pain in gut, very dark urine in spite of the gallons of water, and scalp tenderness and hair loss.
This is not an experience I want to revisit, but I have learnt a few things and am pleased to say that my immune systems seems much more efficient now than a few years ago.
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyii, Azi MWF, metroii pulse. Zoo keeper for Ella, RRMSii, At worse EDSSii 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Michele, sorry you've been
Michele, sorry you've been so ill but it's great that you can see the positives in this and how much stronger you are.
I've had the flu from hell too, it started like yours with a sore throat that seemed to be going after two days but then the flu symptoms hit with terrible shivering and joints aching so much that I couldn't stand up for long, plus bad rib/back pain and coughing that made it hurt to swallow. The positives for me have been that although I still feel a bit tired I quickly got back to normal activity, a few years ago such a dose of flu would wipe me out for months
Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
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Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Michele, I hope you feel
Michele,
I hope you feel better soon.
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. Bitten by ticks Summer 04. CPNi dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07. 2400mg NAC 200mg. Doxyi Jan08. 300mg Roxyi Apr08.
Michele, Sorry to hear
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
Thanks for the good wishes I
Thanks for the good wishes I am more myself today,now able to go upstairs without breaking into a sweat.
It also goes to show that two years of treatment does not make you immunei to nasty surprises. I think it was the building up of porphyrins and the flu in combination which made this such a nasty experience. But every cloud has a silver lining.
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
Oh, Michele! Am sorry to
Oh, Michele! Am sorry to know of all that you are going through. You, of all people. How encouraging that you can find a silver lining in all such clouds. I really hope that your immunei system really will kick in stronger and stronger. Hugs and Best Wishes for continuing recovery! --Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAI am so glad you are
I am so glad you are starting to feel better!
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, Pulse8 750mg 4day,375X1 3-24-8
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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 11-1-08Michele - Sorry you have
Michele - Sorry you have been under the weather (understatement I know). Hope your week long trip through hell is over and that you are feeling better soon!
Watch that Rifampin - it really kicks up the porphyriai as I have learned.
Daisy - Husband on CAPi 5/07. Roxyi, Diflucan round three 4-3, Rifampin, Bactrim DS, Mepron, Prednisone,
Novantrone, Doxyi, Azithromycin, Flagyli, Minoi___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Yea! Daisy, I think that is
Yea! Daisy, I think that is what did it, it creeps up on you and then wham its there and you have to deal. Unfortunately, this time it whammed me at the same time as the flu...
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, Are you feeling
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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 I have CPNi and just
Hi I have CPNi and just started a combined abxi protocol after trying the MPi since May last year. My concern is I know its has affected my brain and my heart. I keep getting palpitations and gasping for air and I get the crunching in my kneck and head. Im due to have an MRI scan and Im hopefully going to be well enough to go to a couple of ME conventions to learn as much as I can about the disease. Every time I get one of these episodes I think Im having a heart attack and perhaps should be rushing to A and E I nearly rang an ambulance last night do others experience this
Jean
Michelle, Hope that you
Michelle,
Hope that you are feeling better. My friend advised me that there is a virus doing the rounds that causes severe head pain, back pain, sore throat and generally feeling yuck. Unfortunately, i think that I may have picked it up because all of my head is so sore that I cannot bear to touch it. Feel like I have the flu but without a runny nose. It has increased my joint pain from fibro and I just want to lie down,close my eyes and go to sleep( and hopefully wake up and it will be gone). Having to up pain relief and lie with cold compresses on my head.....what a sight !!
Dawn
Dawn, Liverpool, UK, CAPi for Chlamydia Pneumonia since Nov 2007. Amoxycillin 1000mg, Flagyli 400mg, Isoniazid 300mg. Also Azithromycn 125mg 3x per week.
Diagnosed with Fibro April 2007. Rediagnosed Nov with ME/CFSi/Fibromyalgiai.
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Dawn, Liverpool, UK, CAPi for Chlamydia Pneumonia since Nov 2007.
Amoxycillin 1000mg, Flagyl 400mg, Isoniazid 300mg. Also Azithromycn 125mg 3x per week.2nd course , Ivermectin 12mgs x3, Metronidazolei 400mg, Rifam
Jean, I used to suffer with
Jean,
I used to suffer with palpitations a lot before I was diagnosed with CPNi, fortunately they seem to have gone away. I was in hospital at the time and had numerous ecg's and heart scans...showed no problems/defects.
Used to also gasp for air especially at night, so much that I slept with a fan blowing air on me. When I was being diagnosed with CPN I was asked if I felt like I was gasping for air. My neck, head and all joints crack loudly all the time at the moment, it was one of the first symptoms that i noticed before being diagnosed...people turn and pull a face sometimes because it is so loud. All my MRI scans were negative, but it best to be checked out just to be on the safe side.
Take care
Dawn
Dawn, Liverpool, UK, CAPi for Chlamydia Pneumonia since Nov 2007. Amoxycillin 1000mg, Flagyli 400mg, Isoniazid 300mg. Also Azithromycn 125mg 3x per week.
Diagnosed with Fibro April 2007. Rediagnosed Nov with ME/CFSi/Fibromyalgiai.
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Dawn, Liverpool, UK, CAPi for Chlamydia Pneumonia since Nov 2007.
Amoxycillin 1000mg, Flagyl 400mg, Isoniazid 300mg. Also Azithromycn 125mg 3x per week.2nd course , Ivermectin 12mgs x3, Metronidazolei 400mg, Rifam
Thanks Dawn Im experiencing
Thanks Dawn
Im experiencing exactly those symptoms. Ive started combined abxi about a week ago and Im hoping this is perhaps the start of flushing some of the bugs out. I have a fan and an air purifier so Ill try them before going to A and E
Jean
Poor Michèle, I hope you
An Itinerary in Light and Shadow by the real "Painter of Light"...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Hi Jean, we are sort of
Hi Jean, we are sort of hijacking Michele's thread here, but I just wanted to know if you had a chance to add a signature. It can be found under my account section. It just gives people an idea of where you are right now in terms of diagnosis, treatment.
I have a heart arythmia that started up about the same time I was awakening in the middle of the night gasping for air & panic attack. Judging from the migraines I used to get pre CAPi & continued fog (but less post CAP), the CPni is in my brain & my heart among alot of other places I am sure!
When you start, work up slow! Welcome
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (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, Pulse8 750mg 4day,375X1 3-24-8
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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