Just an update from pulse two. I feel like death, nothing really hurts except everything... I feel poisened. I had an attack last night of what im going to affectionatly label "suicide psychosis". I just feel poisened, really poisened, I didnt want to get out of bed this morning, my legs feel like fibro pain.... yes "flagyl induced neuropsychiatric brain poisening" thats what I have.
It really makes me think I have lyme... can Cpni porpheria or hsp60 or lsp really do this? Make me want to kill myself? Ill be honest because I have to...I psychotically cried myself to sleep and prayed to die last night.
Only 4 more days and Ill stop the flagyl... worth mentioning though 2 factors that probably contributed to this.
#1 - I took both doxyi pills at the same time ( 200 ) instead of 100 and 100
#2 - I ran out of gatorade.
Anyway, Im in control at this moment and I do consiously know that just like last time, Ill be ok in a few days, I believe this is just how its going to be for me to start. As bad as this whole ordeal sounds, I'd prefer this over the grawing facial pain any day and I dont regret doing this pulse... I have to do it because the facial pain is just too much
So anyway, Im ok - alive anyway. Just waiting for some $ so I can order the roxyi and get some real killage and also get some cal pyv to try the new protocol.
Hope all are well
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CPNi pcrii and antibody positive , treating MSii, CFSii, TMJ, trigeminal neuralgia, IBSii neutropenia, pus found in facial bone, Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroii pulses each month.
Clammed up, Hold on to
Clammed up, Hold on to your precious life with your last scrap of guts, soul, spirit, and grit. This is a temporary situation, and death is a permanent solution. I can only offer this--- in Steve's early days on the CAPi, he had to use St. John's Wort for about 10 days starting about in the middle or toward the end of each flagyli pulse. Same for me. Lately, Steve has had success at controlling all the fallout this way: one 25mg Benadryl at the end of the workday, a double-dose of Questran or 12 to 15 charcoal capsules in the wee hours, extra vitamin C, sublingual B12 several times a day, two glucose tablets before meals and whenever he feels foggy, and only one time did he have to skip dinner and use Tagamet with pyruvate. Plus he has a foot soak for 20-30 minutes in water with hydrogen peroxide (I still don't understand why this helps, but it does). Epsom salts baths also help. Doing all these in combination has made an enormous difference. You feel like bl__dy hell, but get busy on anti-porphyric measures + anti-LPS + anti-HSPi measures to help get yourself out of this funk. And yes, you may want to re-think how fast you are going! Bless you,
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.
Joyce has good advice... Do
Joyce has good advice... Do as much of it as you can... And yes Cpni and Flagyl can make you feel this way especially in the beginning. Someone once said that they could burst out crying anywhere anytime, even when out shopping...
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 6.5 Wheldon CAP 16th March 2006
Clammed - Hope you are
Clammed - Hope you are alright soon ! Please take care !
I don't know if I am reading some of your posts right but it seems you are wondering if you have lyme or CPNi as the cause of your health miseries?
Many many many people who post here have both. We have had some chicken or the egg conversations as to which one came first but if you have both - treatment can potentially be more difficult.
Based on your facial nerve pain and what appears to be severely porphyric reaction to metroi pulses I'd bet my money that you have both.
I'll throw this out as a hypothesis, because you have been on antibioticsi for quiet a while (can't remember how long), you have likely forced quiet a bit of CPn into cryptic formi. When the Flagyl hits it --- you are bathed - no soaked - in not only porphyriai but endotoxini and HSPi reactions as the bacteria die. Hopefully when you can get the Ca+ Pyruvate it will really make a difference for you and make your pulses and pulse reactions much better !
You have mentioned that Biaxin may not work for you anymore because you have taken it so much in the past. That may be true - especially if you took it sporadically and at lower doses. In that case resistance could have developed to CPn or borrelia.
Another possible thought is that much of the relief you were experiencing on Biaxin was immunomodulation. Eventually the immunomodulation effect may run out as more and more CPn are pushed into cryptic form and generate more and more HSP. Just a thought... may well be that if you use Biaxin again with Doxyi or Minoi plus CaPyruvate you will find it works well for you again - and that you get that lovely immunomodulatory relief again.
Please try to keep your chin up and end the pulse early if you need to. Others may say nay to this but given how much Flagyl takes your pain away and given your severe reaction to it - you may try pulsing one day (or even 1.5 days) per week rather than 5 days every three weeks. This could give you facial pain relief every week without completely destroying you in other areas.
Just some thoughts... hang in there better days are hopefully around the corner for you.
PS - if you doubt Flagyl and porphyria can do this to you - read MSWillow's blog - especially the posts from her first year on CAP. Your reactions rival hers.
Daisy - Husband on CAP 5/07. Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxy, Azithromycin, Flagyl, Mino___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Hi there clammed, I hope you
Hi there clammed,
I hope you are doing better! Girl, it is really important when you hit yourself with the third antibiotic to have the anti toxin measures (described above) on hand. If you are having a rough time it is ok to back off on a pulse.
Listen to your body, take your time.
peace
CFIDSi/ME 26yrs, 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#9 750mg 5.5 day, 4-25-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days"can Cpnii porpheria or
"can Cpnii porpheria or hsp60 or lsp really do this?" YES! YES! YES! All you have to do is read Willow's early blogs and include suicidal thoughts right up there with severe porphyriai. Listen to Joyce's suggestions. You now have a repeated experiment, time to add a new variable like cholestyramine rather than repeat the same experiment!
CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, 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
i echo cypriane et al.
i echo cypriane et al. often i have gone around feeling awful, awful, awful, mentally and physically. suddenly 'the penny drops' and i start the anti-porphoria measures in earnest - and it makes huge difference, and if you look at cypriane's list there is a lot to choose from. The only thing that doesn't really get touched much is fatigue and weakness; I just have to rest. Also I'm up to pulse 6 and I'm still only doing 2 or 3 day pulses ....
M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
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M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
You are all so kind and
You are all so kind and supportive, I really appreciate you all just being here and allowing me to go through the motions without judgement. This disease is horrific. I still feel like death today, awful awful awful - exactly yes... I could just vomit endlessly and cry stupid nothing tears for days and days and days. I stand up out of bed, look around and then crawl back into bed. Thats how i feel mostly... like arsenic. I do know that I have to do better with the porph measures, its just $ right now and i have a bit of fear of the chlorestramine for some reason, not easy but I will do better next month.
Anyway, 3 days to go.
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CPNi pcri and antibody positive , treating MSi,
CFSi, TMJ, trigeminal neuralgia,IBSineutropenia, pus found in facial bone,Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.