BeezNeez's blog

Rifampin and me

Well this drug is HEAVY. I have only been able to tolerate 1 Rifampin per week for the past 4 weeks. Herxing is severe from just only one dose. Stiff and painful neck and spine, headaches, cotton wool brain. Tai Chi practice is woeful - lost the plot. I do improve during the week then head downhill again after Monday dose. I think it will take quite some time to take 2 per week let alone one every day.

I'm guessing I've really hit the target with this drug.

Ladybug has fallen in a heap after 2 3/4 years. Rifampin seems to have been the straw that broke the camel's back for her. That's why this blog is so important for us all.

 

Cheers from Oz

Update from Aussie

Victory

Just an update on my progress. I have had great difficulty with porphyriai on most abxi since starting CPNi. I am also unable to take anything that assists the mopping up of toxins e.g. charcoal/cholestyramine/diatomaceous earth etc etc. Was able to get to maximum amoxacillin before porphyria raised its ugly head. Attempted Rifampicin - same deal. So basically I am able to pulse Zithromax and Flagyli with attempts of other abxi over time. Last week I started 2 x Nilstat Mon/Tue/Wed then herxheimer was overwhelming. I will start again at 1/2 tablet daily and see how I go.

I spent 5 years on Marshall Protocol prior to CPn so have been around (as they say) and gained quite some ground doing the MP.

Porphyria on Amoxycillin

Last week I started on Amoxycillin and Probenecid twice daily after ramping as recommended. The week prior I had pulsed with Flagyli and felt fantastic. Had so much energy wasn't quite sure what to do with it.... Friends suggested I visit to clean their homes!!

But on adding in second Amoxycillin last Monday - had acute porphyriai attack. Terrible pain in liver and abdomen. Taking 4 Endone, 4 Buscopan Forte + sleeping tablet just does nothing. Pacing floor until 4am and finally get 2 hours sleep. Lots of glucose ingestsion as well. When I have these more acute attacks it can take weeks to recover.

A cautionary tale

I have been on Marshall Protocol for approximately 6 years (give or take a few months off here and there). I changed to CAPi and commenced 1 x 1000mg NACi daily in July. The day after I started NAC I took my usual dose of 250mg of Zithromax which is taken every 7 days on MPi. Two days later, I had a very painful and unusual lower back ache for no known reason (no injury etc).

I ceased NAC 10 days after commencement to see if that was the reason for this now extremely painful back. I had increased Zithromax to 250mg M/W/F. I decided NAC couldn't be the reason for the backache as I had not taken it for a week.

New and interested in Porphyria

 I have been on another protocol for CFSi and FM and CRPS (complex regional pain syndrome) and am completing some tests to move over to CPni help.

But I am SO interested in secondary porphyriai. I have been dogged by a monthly acute pain that has been around for 18 years now. I have had all sorts of 'oscopies' that were NAD and lots of all sorts of tests with no outcomes. I have had 2 urine tests which indicate low level porphyrins but I'm afraid that no doctor of influence has had any idea of what is occurring.

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