5 Apr 2021
Author
toliveagain
Title

anyone out there?

Body

Hello anyone and everyone. Wondering if there is anyone out there. I am approaching my one year anniversary of being on the protocol and feeling a little alone. I will post what's happening in a reply so the whole thing will be viewable.

Comments

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.

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.

Hi toliveagain,

I was glad to see your post because I was beginning to think the same thing. Between the constant personal battle of cpn along with the world's war with covid, I think everybody is kinda keeping their head down!

Anyway, I wish I could offer up some good advice on porphyria and any of the supplements but my knowledge is quite limited. The one thing I noticed when I backed down on NAC (from 1800mg to 600mg), my breathing and lung strength suffered. I've brought it back to 1200mg and may go back to 1800mg. The only way I seem to be able to take these supplements is to swallow them all at the same time with a few gulps of orange juice. I still take my daily doxi/roxi & tinni for pulses (finished #20 last Friday. My latest 3 treadmill attempts have been mostly failures but I'll keep trying.

Thanks for your post to me and the info on a TENS unit. I sent you a PM but I'm not sure you received it.

Stay strong, everyone!

Chris

I am a retired guitar repair/restorer after 35 years. I live in Colorado and am wanting to now restore my health!

Hello Toliveagain and Chris, I'm afraid that I can't be of much help here, because I was never much affected by porphyria.

I wondered why some people were so much more affected than I was but never came to an answer. I think that this is one of those questions where people are best left to experiment and hopefully find something that suits them.

So, if anyone has found an answer, please post it here!

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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.

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.