Porphyria on Amoxycillin

Submitted by BeezNeez on Sat, 2011-03-05 02:57

Last week I started on Amoxycillin and Probenecid twice daily after ramping as recommended. The week prior I had pulsed with Flagyl 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 porphyria 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.

I do have a regular attack every month for no known reason but I have read the paper that Basil has listed abut another woman who had regular monthly porphyria - thank you Basil Shame you don't respond to any emails now as you probably could throw a little more light on my situation.

I am now at a loss as to what abx to take. I was ready to trial Rifampicin but I am concerned as it seems implicated in porphyria. I have had issues with Klacid and Vibramycin combo when on previous protocol.  I think I can take Doxy with no porphyria.

So right now, I am disappointed and frustrated. I understand that if I can get the right abx combo I can get rid of the porphyria which I had had for about 18 years now. But getting the wrong abx combos exacerbate the porphyria. I seem to be in a Catch 22 situation.

I have made an appointment to see an haemotologist later this month, but I resent paying doctors to teach them about prophyria. Because I never have positive urine tests, they never look at my clinical picture - they are purely evidence based.

Any suggestions would be really really welcome..........

 

 

 

Hello BeezNeez,  I am sorry  you are having porphyria issues.   It appears you are taking the glucose -- anything else?   Charcoal?  Chorella, Cholestyramine?   I experienced several episodes during my first 2 years of treatment.   Also, as you probably know --  if you are not clearing the toxins out of your body after  pulsing,  that could be contributing as well -- it appears perhaps the pulse tiggered the attack? 

I had several major issues taking me to the hospital when I didn't know it was porphyria (and they didn't know what to do with me either).  It is frustrating to go to doctors who know nothing of the repercussions of this bacteria and it's treatment. 

You have probably seen this, but a good review here on the site is this section (recommendations by Dr. Stratton while on the protocol?) especially the numerated paragraphs?  This is a good one too:  http://cpnhelp.org/reactions_and_remedies

I hope you get it figured out....

Basil hasn't been around on the site for quite some time..... people come and go here.....maybe he'll pop in.

JeanneRoz

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Thanks for your comments. Unfortunately I am unable to take Charcoal/Cholestyramine/Diatomaceous Earth as these products just shut down my gut and severely constipate me. As I have had 2 anal fissures in the past, I am not keen to take them. Vitamin C flush could be worthwhile.  have added in citrus pectin hopefully for the same effect as the suggested ones.

My major concern is what antibiotic to trial next?? If I can find my way through some antibiotic combos, I am more likely to get rid of porphyria.  I am looking for an end result

Thanks again

CFS 32years/FM 14 years/ CRPS 5 years/.  Previously MP 5 years. Off everything since 01/12/2012.

 

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Charcoal will constipate anyone at first..which is why they recommend that you begin slowly, with a gram or a half gram and work your way up to the full 4 grams at a time.

Charcoal helped with die-off and herxing for me..the B12 was vital to help with the porphyria issues. At that time, I injected myself with B12 IM thrice weekly ( I forget the dose) , but later on, Dr. S found that 5000 mcg subligual B12 at bedtime worked just as well.

Diana

I always assumed that charcoal helped with porphyria.  It seems to help with mine.

I am new at this so someone with more experience could confirm or refute this but if porphyria is a result of reduced ATP in the cell then something like creatine or D-ribose should help.  I take creatine because it helps my energy levels and brain fog.  But my porphyria is not very frequent or serious, relatively speaking, so I can't say from personal experience if creatine and D-ribose help with it.

Started CAP for Cpn on 11/14/10 - Per my doctor, paused Abx 5/18/13 - NAC, T3, St Johns Wort, B-complex, Vit C, Vit D3 (8,000/day), Vit E, Astragalus, Chlorella, Chelation with Alpha Lipoic Acid. Started Buhner protocal (2nd edition) on 8/30/16.

Maybe chlorella would be a good mopper for you then.  I haven't heard of that causing constipation.

Pectin might exacerbate constipation though.

Started CAP for Cpn on 11/14/10 - Per my doctor, paused Abx 5/18/13 - NAC, T3, St Johns Wort, B-complex, Vit C, Vit D3 (8,000/day), Vit E, Astragalus, Chlorella, Chelation with Alpha Lipoic Acid. Started Buhner protocal (2nd edition) on 8/30/16.

I had so much constipation with cholestyramine and charcoal that I had trouble taking them. I also had so much porphyria that I was in a real bind. I now take DetoxyFiber to combat the constipation and mop up toxins.. I wouldn' think it is as good against porphyria as cholestyramine.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)