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I am having some trouble with porphyria. I am taking 300mg Roxi, 100mg Doxy BID, NAC 300mg BID & had completed 11 pulses of flagyl (some only 2-3 days) by month 10.5. I take a bunch of supplements, all on the Wheldon list plus: Clemestine (a study said it might have anti-chlamydia properties) and Relora (Australian Magnolia Bark - anti-chlamydia), Holy basil (found to improve MS), Doxazosin (found to improve MS).

I have had problems with porphyria all along. To combat porphyria I take Cholestyramine (once a day because I don't have much and can't get more), Cholorella 100mg BID, Charcoal 1800 - 2700mg @ HS, lots of fluids. And during pulses I take Cimetadine.

My porphyria was so bad I took 10 days off of abx recently until it seemed to get better. It never completely went away but 10 days seemed like the longest I felt comfortable off abx. I didn't want my MS to get worse. So I started back up at same Roxi 300/Doxy 200/NAC 600 + supplements. Within 4 days had insomnia so bad 10mg Melatoin/25mg benadryl/warm milk/hypnosis tapes can't get me to sleep. I have skin lesions on my face, hands and chest when I have only been in diffuse sun for a few mins.

I tried a Vitamin C flush the day before yesterday. I took 1000mg Buffered powdered Vit C every 20 minutes until watery BM. It took 27,000mg to get there (drinking tons of fluids all day). The next day I felt great and lesions seemed to be clear. By evening, 24 hours after flush, I could feel porphyria coming back. Now 24 hours after that, I am back where I was prior to the vit C flush, possibly worse with worse lesions, more significant insomnia, etc.

What do I do? My next thought is to hold back on NAC to 600mg/day or maybe none at all. And to cut back on Doxy to 100mg in am only.

I feel I am going backwards. Any help is appreciated.

Hey, you two, you neither of you mention activated charcoal, supposed to work well for porphyria. Since I took about ten capsules a day, that is maybe why I never suffered with porphyria!

Sarah 

Hi Sarah, Thanks fpr getting back to us. I do take Charcoal. I mentioned in my long ramble that I am taking 1800-2700mg/d. The charcoal pills I get are 450mg each 4 to 8 most days. It is difficult to judge how much everyone else was taking because most people just say "6 pills" or "10 pills" or whatever. At one point I do remember someone saying their charcoal was 250mg, so I think mine are nearly double strength.

I also Take Chlorella 1000-2000mg a day. And I drink Cholestyramine resin about 5 times a week. I am running out of the cholestyramine and don't think I can get more.

That's why I was asking, "What do I try next?"

Also, and this is just a guess... no scientific backing at all. It seems from previous posts that the people who experienced porphyria may have had CPN in the liver????  So those who did not have CPN on the liver may have been spared. I don't know.

Dear Sarah and all

I have been away from this site for some time as Sonal, Amit my son and her husband and both children were down with Covid. Fortunately all recovered at home with some medication from a doctor on line. Then later my spouse Naresh Khanna got Covid, also mild and now recovered.

Its been a worrisome gruesome five weeks and Delhi is simply awash with Covid with num,bers goind through the roof and no hospital beds, not even doctors on line as they are all so busy! a nightmare.

Sonal has had setbacks as you can imagine, with entire family down, her phsio not able to come. She is now almost wholly wheelchair bound. Not able to take more than a few steps at a time with support from husband.

Sarah she has now taken the protocol for two full years. Simply dont know what to do next.

Take care. How are you coping Sarah?

Neena

It’s good to hear from you, Neena, as I have felt very concerned about you all, with seeing the reports of the awful Covid situation where you are. Glad to hear you are all recovering.

I continued the abx protocol for many years - and didn’t see the first glimmers of improvement until around two and a half to three years after starting. My advice would be to continue - after all, there is nothing to be lost by continuing and everything to hope for.

Hi Neena and all. I second everything Boadicea just wrote, particularly about your family recovering from Covid. The battle continues.

Be strong!

Christopher

Dear Sarah and all

One has learnt to expect and want so little. And at the moment i am just grateful that we were brushed by Covid but escaped its wrath. So many I know or their relatives have died, uopiungish people in their forties and fifties. Heartbreaking. And medical services have all but collapsed. Slowly recovering now as numbers have steadied or going down.

Yes Sonal will continue the protocol but she dreads the pulse as it makes her puke and then she doesnt know whether the meds are still in her or have been thrown out. She is exploring whether her physio guy can come back now that the family has recovered from Covid.

Sarah good to know that slowly you are able to deal with the big blow earlier in the year.

take care all of you

Neena

Hi Everyone,

I just wanted to chime in and say hello. I have been away for awhile. I am so sorry to hear many of you have had covid. It is so frightening. As if we don't have enough to take care of in beating this bacterial infection. I am glad you are all over the virus and recovered without harm, well, except for Sonal setback because of lack of physio. But that will come back fast once she starts back up.

I don't know if I have had covid or not. I have had a few occasions where I have felt "flu-like", but have not gotten super ill. Thank goodness because with all my die off reactions, I am not sure I could handle something else on top of it.

I have been away from the site because I did not want to burden anyone with my whoas. I have had a tough time recently with cutaneous porphyria, but I think... I hope, I am finally through the tough parts. I have gone off antibiotics twice in the last month because my skin was so red, with lesions and painful, I couldn't handle it. I have tried all remedies listed here on this site from Cimetidine to Vitamin C flushes to all the moppers. Also had my liver function tests done and they are all normal. I tried hydrocortisone - nope seemed to make it worse. The only thing that helped was taking a break from abx.

I went off for a week and when my skin seemed to be clearing, went back on. Within 3 days skin started to burn with red patches coming back (face and hands). So went off again. It has been 5 days and my skin is much better. I found a cream with high zinc oxide content. It seems to be making the lesions clear faster so I am hoping it will keep the lesions down and under control while back on abx. I started antibiotics back up today. Wish me luck.

Good news is that during each of the times I was off abx, everything got so good. My brain fog lifted and I could think and I was funny with friends. A couple mentioned they never knew I had a sense of humor. My memory started to come back. I could remember those 6 digit number security codes you get via text to enter accounts. While on abx, I would have to write those down and could only remember 1-2 digits at a time. But off abx, I could remember 9-12 digits easily.

So I am totally enthused and encouraged to keep going. I just have to figure out what works for me with all this die off (brain fog, memory loss, uncoordinated and walking like a robot, loss of balance, skin lesions - those are the top 5 die off symptoms I have). So far, nothing listed on this site has done the trick.

I do feel incredibly better after having drunk a bottle of pine tree needle tea (I make it myself). It has Suramin and Sirkanin, two things that are supposed to help fight viruses. I found out about it and started making and drinking it a few days ago, to help ward off covid. I get a huge boost of energy and feel lighter and clearer for about 2 hours after each bottle i drink. I am hoping the boost in energy and clearing of my head (and maybe clearing of skin) will continue if I continue to drink it. Maybe it clears toxins??? I will keep you posted.

I also found a cream that has high zinc oxide content and have been putting it on my lesions. They seemed to clear a bit faster this time while off abx, so now that I started back up on abx, I hope the zinc oxide might help keep the skin lesions to a minimum.

Anyway, just to reiterate and to try to encourage anyone thinking of quitting. I have been on abx for 13 months and I am just now, just barely starting to see improvements. And I only happened to see those improvements because I went off abx for a short time because the die off symptoms were continuing to increase for me, month after month, yes even at month 13 they were still increasing and getting worse. If I had not stopped abx for a week, I would be thinking the protocol was NOT working and my MS was getting worse.

But in fact I now believe it is getting better, and possibly hitting a crescendo or peak in the die off reactions. Gosh, I hope this is the peak. I don't know if I could take it if it were worse.

Wishing everyone a ton of luck and hoping everyone improves with every passing day. My heart goes out to all of you and I am sending strength and healing vibes to my online friends here and all those with CPN... and Covid and any and every other illness  out there.

Warmest wishes for each new day