Cpnhelp.org

The website ghosts ate my post again. I will try again

I hope there are still some scientific-y people that still check in. Norman... are you out there? I am having trouble figuring out how to treat my cutaneous porphyria and if hydrochloroquine, and/or grapefruit is good or bad. I have done a search on this site and I can't get into some of the posts (seems like first post of a thread is cut short) and that is usually where the good info is. It seems like people touched on these subjects but I cannot find results or conclusions in a search of the site. My backgroud:

I started the antibiotic protocol for RRMS MS that had most likely progressed to PPMS 13 months ago (self prescribed). My symptoms got worse over the first 8 months. Symptoms were typical die off described by others, although like others, these symptoms also seem to be the same as my MS symptoms. EXCEPT for the addition of cutaneous porphyria. That was a new symptom for me and I had never had anything like it prior to taking antibiotics. So I used that symptom as an indicator as to when to back off CPN treatment. I really pushed it in the beginning and was taking flagyl every two weeks if I thought I could handle it, etc. I used skin lesions as MY indicator that I was pushing too hard, and I would pull back a bit and the lesions would go away.

In the last 3 months (months 10 - 13), I have had cutaneous porphyria pretty constant. I have gone off antibiotics completely 3 times (about a week each time) and have not taken flagyl in months. In the last instance I was off all supplements except vitamins and antioxidants as well. Each time I go off antibiotics I feel a million times better for a few days (like normal with good cognition and memory improvement, balance, walking normal, etc - most of my die off AND MS symptoms go away). Then after 4-5 days off antibiotics, my MS symptoms seem to start to reappear - my balance gets a little worse, my memory fades, etc. Meanwhile my cutaneous porphyria would be clearing, so being nervous about my increasing MS symptoms and the porphyria seeming to fade, I would restart antibiotics with Roxi 300mg/d & Doxy 100mg twice a day. I have not taken Flagyl (the drug that used to bring on my porphyria) in the last 2.5 months. When I start back on Roxi/Doxy + supplements, the cutaneous porphyria comes right back within a few days. To reiterate, from just being on Roxi and Doxy (my baseline - no pulses, no flagyl). And skin lesions get bigger, deeper, more pronounced each time they come back. I almost seem to be getting more sensitive to the antibiotics with each stop/start. So part of me does not want to stop ever again.

In the last month I have also been getting this circumoral redness. No rash, no bumps, just red, ruddy, maybe waxy-looking skin around my mouth and nose and a bit on my cheeks. Kind of Lupus-like maybe? But also looks histamine-like. Like a histamine redness?

I have tried alot of things to help with the skin lesions: all the moppers, cimetidine, making my body more alkaline, various diet (example, gluten free), zinc oxide creams, staying out of the sun (which is impossible as even 5 mins of diffuse sun can cause a bad flare and the circumoral redness seems to be NOT sun related).

So I am reading allot lately trying to figure this out!!! In conjunction, to reading about secondary cutaneous porphyria, and hydrochloroquine and grapefruit and Cimetidine which all slow down the Cytochrome P450 system and thereby are supposed to decrease porphyrin production, which is what I thought was bringing on the skin lesions and face redness... I have been reading about Tavist (Clemastine) and how some people have cured their MS with this antihistamine drug. I read about it months ago and have been taking Tavist 1mg twice a day in addition to my antibiotics and other supplements for months, to aide in CPN destruction and I also have hayfever. Two birds! I started reading more about Clemastine and got into the whole "histamine" issue (H1, H2, H3, H4) as it is related to MS. How some people believe MS is a histamine intolerance. And I started to wonder if my skin lesions were an over abundance of histamine rather than porphyrin?

And now I am really confused but I am leaning towards porphyrins because of the sun element and the experiment I did last night where additional antihistamines seemed to make it worse.

I have gotten myself so confused as to what to try next to help with my porphyria. I read that hydrochloroquine can help with secondary cutaneous porphyria. Hydrochloroquine is impossible to get OTC or by Rx in my area right now because of covid, So I am eating grapefruits and I made my own quinine by boiling grapefruit peels and I have started drinking that concoction. It has only been 2 days of the grapefruit diet so too soon to tell, and I stupidly mixed experiments and took high dose antihistamines last night while just having started the grapefruit diet, only to awake to worse lesions. Is it high dose anti-histamines or grapefruit causing the worsening lesions?? 

The histamine people say to avoid grapefruit as it increases histamine and they say to avoid cimetidine because it blocks the wrong histamine (H2)? That is If I am reading correctly in my brain fog. I am confused because taking cimetidine did not seem to help me. So are histamine people correct and cimetidine is bad? But I was also taking Clemastine (Tavist) at the time and getting worse, so are the histamine people wrong?

But as I say, I have been reading about these things: hydrochloroquine, quinine, grapefruit and histamines and antihistamines how they affect MS, and porphyria... and I am getting really confused.

One thing I did, was yesterday I read a patient account of where she took 5mg Clemastine before bed for 2 days (In the study where people were cured with Clemastine they took 10mg/d for 4 months). She said she felt horrible during the 2 days and couldn't keep taking it (die off???). But after those two days and Clemastine wore off, she climbed stairs for the first time in years. This account seems to follow the histamine theory. So last night I conducted an experiment. I took 5mg Clemastine before bed (I normally take 1-2mg/d) and when I awoke in the morning, my facial redness was the worst I have ever seen. I was dizzy and had some significant die off. So did it kill some CPN or did I decrease my histamine load? Problem is it seemed to worsen my porphyria. Did it work?? Is the facial redness and skin lesions just something I am going to have to live with until I get through more die off?? Should I chow down on Clemastine for a few weeks and sit in my room nursing my skin lesions?

• Basically, it seems like the treatments for pseudo cutaneous porphyria are the opposite of those to treat MS (either CPN or histamine theory). Does that sound right??  Has anyone found literature or from personal experience, a treatment for cutaneous porphyria that works WITH CPN treatment? And should I eat grapefruits and drink my quinine concoction or not? Should I go off antibiotics again for longer? I am afraid to go off because as I said, my porphyria seemed to be worse each time I went back on. Also, I have been doing this for over a year. i don't want to backtrack and have to start over. Maybe the worsening porphyria with each restart is a good thing? maybe the pulses (even with just Roxi and Doxy) kill more CPN so the worsening porphyria is an indication of greater die off? My brain fog is so bad right now that i am so confused.

I would love to have someone comment on all this and help me make sense of it. I am so confused?? Any help is much appreciated!!!

Sorry you are having such a difficult time with it all.  I’m afraid I’m not one of the science-y ones that you are hoping will respond, but happy to share my own experience.

I’ve had many years of secondary porphyria (AIP) caused by Cpn, which has always made treatment a huge challenge.  I had to go very slowly with the treatment and managed fewer pulses than most people – needing to take shorter pulses and allow longer gaps between.  I spent years searching for an answer regarding the porphyria, but the only thing which I’ve ever found helps with the porphyria is a relatively high carb diet – and lots of carbs/glucose to help ease a flare-up.  Although this link relates to Lyme Disease, it does also mention Cpn as a cause of secondary porphyria.  I thought you might find it helpful: https://neilnathanmd.com/newsletter-6-porphyia-another-elephant-in-the-room/

The other thing which leaps out at me from what you have written is that you are taking doxy.  The combination of doxy and porphyria made me hugely sun-sensitive – I was getting chemical-like burns even on a cloudy day and, at my worst, could hardly go outside in daylight, even well covered.  In your position, as your skin is so affected, I would definitely see if there was a possibility of swapping doxy for minocycline, just to see whether doxy might be contributing to the problems in some way. 

I'm here, but I don't have much in the way of answers.  Secondary porphyria is something this website has (or at least had) a lot of information on, as a known consequence of killing Cpn: the idea is that Cpn steals ATP and inhibits heme synthesis, so intermediate stages in that synthesis (porphyrins) pile up; they're then released when the cell dies.

Of the various things recommended for it, activated charcoal is the main one: stops re-absorption of porphyrins excreted in the bile.

Anyway, porphyria is something that can be tested for: see for example

https://www.mayocliniclabs.com/it-mmfiles/Porphyria__Cutaneous__Testing_Algorithm.pdf

so as regards wondering whether this is porphyria or something else, there are tests for that (and even for what specific type of porphyria it is, and whether you have a genetic proclivity for that sort of porphyria).

Thank you both for answering. You do not know how much it means to know there are other people out there.

I realize my post was a mish mash of thoughts and ideas and questions. I was in a quagmire of brain fog. I have a gut feeling that my cutaneous porphyria is due to adding in Clemastine which is an antihistamine as well as having anti-CPN properties. And then having read Drs. Vanta and Wahls discuss MS as a histamine intolerance, well I started to have ideas that got all jumbled up. Since my post, I have decided to forget about the histamine angle, and I have come to a conclusion similar to what Boadicea discussed (BTW I think of you as being one of the "science-y" group. Your ideas and insights have been incredibly helpful)... I have come to the conclusion I pushed too hard and need to slow down. And possibly my body might have become hypersensitive to the die off. I did 14 pulses in 12 months and was taking not only the Wheldon protocol, but adding in Clemastine and other "CPN killer" supplements that I have read about. I think it was too much too fast. 

I am incredibly happy with my overall progress over this last year as I have gone from an almost invalid state where I occasionally had to go up the stairs in my house on my butt and 30 times a day would lose my balance and fall into walls, to now having an occasional weak day where I might mis-judge a step and plant my foot too hard and only losing my balance if I turn too fast. But I am walking miles a day and doing lots of stairs. I can even walk in 1.5" heels. My walking and balance and clarity of thought are so much better than they were a year ago.

I have made enough progress that I can function on my own, and I feel I have time to slow down and take a break. Maybe a longer break (a month or two where past breaks have been a few days) will readjust my body to have a higher tolerance for die off. Also, like I said, I have been taking Clemastine (Tavist) all along, but even more of it recently due to spring-time allergies. It may have been too many different CPN killers at once.

I am going to go off antibiotics for a month or two, while continuing to take Clemastine for hayfever. Once the allergy season settles, I'll cut back or go off Clemastine and restart antibiotics. Hopefully that will solve my problem.

And like you said Boadicea, minocycline might be better for me. After all, my porphyria has been only cutaneous with no abdominal, urinary or other symptoms. It might be as you say, the skin sensitivity of Doxy PLUS die off. And, Norman, as you suggest, I will step up the charcoal/moppers. Actually cholestyramine seemed to work a little better for me, but I ran out and have not been able to get more. I will try to get my hands on some and use again when I start back up on antibiotics.

Yep, I think you both are correct. I need to slow down, try Minocycline instead of Doxy, and step up the moppers even more. Thank you!!!!

BTW  Boadicea, I read the article you posted. Very very good!! I knew about the glucose, and drinking fluids. I did not know about increasing CO2 and sodium/salt under the tongue. Actually, sadly, I have been trying the opposite, breathwork/hyperventilating/lowering CO2 as a possible treatment. No wonder my porphyria has been getting worse. And my sodium is routinely low when I have labwork done. I will try breathing in a bag and give salt a try.

Thank you for the article and it was helpful (although sad) to hear others have difficulty balancing the treatment of the underlying cause while treating the porphyria. And I am sorry you seemed to have had this issue as well. Thank you for sharing 

Sorry I havent visited this site in a while. As caught up with lots of worried over last few months. So So good to hear Tolive that you have certainly improved.

If I may ask for how long have you been on the protocol? And was it MS or something else that you were diagnosed with?

Sonal hasnt been doing that well. She is now completely dependent for bathing dressing etc. But can still eat on her own. Not only her two legs badly affected but also the right hand. So she is not able to grip a walker like before. But she and her family are soldiering on.

In fact one wonders how long she should carry on with this protocol as its two full years and more.

Neena

Hello Chris, I'm not surprised that your legs feel as heavy as wet sand at the moment, presuming that the weather is as hot as further north. The  trouble is, we aren't even half way through July at the moment so there is probably more to come.

I used to have a treadmill so I know what you mean when you talk about pushback.  However, I had the idea to change from a treadmill to an elliptical trainer and this was one of the best things that I have ever done and straight away I could use it for a much longer time, whatever the weather!

Dear Sarah I will separately email to you some new research done on mouse models claiming to cure their induced MS. If you have time do have a look and tell us what you think. The science writer Forest Ray wrote about it in the Mulstiple Sclerosis Today newslatter to which I subscribe.

Neena

Hi All,

I leave the site for a few weeks and all of a sudden there is tons of activity :). Glad to see it. It has taken me almost 2 hours to read everything and catch up. So nice to catch up.

I am saddened to hear Sonal, Kiki and Chris, that you (Sonal's info from Neena) are not doing as well as you had hoped. I keep telling myself it is going to take alot of time. I also find myself in a bit of a low point. Again, as always, I can't tell if my symptoms are die off (and therefore good) or worsening MS. This is definitely a difficult treatment to deal with on all levels, psych being a big one. My heart goes out to all of us dealing with this bugger CPN.

I thought I would update and give you a glimpse into my own roller coaster ride with CAP. I am currently lost again with new symptoms that I do not recognize.

I was on CAP (Roxithromycin, Doxycycline, Flagyl pulses + supplements) for the first 12 months (did 14 pulses). The Flagyl pulses were getting shorter and lower doses rather than longer due to my profound porphyria and die off symptoms that seemed to be building over time instead of subsiding. After a 12 months, I had to take a break because my symptoms had built up to the point they were almost and maybe worse than when I started CAP.

I went off all abx the beginning of May 2021. During my 1.5 month break, I initially felt really good. Brain fog almost vanished, walking better, balance issue at bay, memory slowly coming back. But that only lasted a few weeks and then I started to notice my MS symptoms coming back again, so I started back up with abx. Having the symptoms subside for a few weeks gave me so much hope and I restarted eager to continue.

I started back up mid June, with Roxithromycin, Minocycline (instead of Doxycycline) and Flagyl pulses and I have completed one pulse so far in this new round about 10 days ago. On restarting abx, I initially felt great again with the MS symptoms that had come back during the break, subsiding again rather quickly. So hopeful. This made me think that changing Doxy to Mino was going to be the ticket to doing the protocol like others I have read about. For me, with the ever worsening porphyria and die off symptoms during the first 12 months, I could never do full pulses and spent much of the time weak, sick and miserable and usually only able to take 600mg NAC a day. Now with the new round, it felt like I was going to be feeling pretty good in between pulses, and I ramped up to 2400mg NAC quite easily. It felt like this time I might have merely the normal level of herx that others described, and not have the debilitating ever increasing porphyria and die off I had been experiencing.

Not so fast. I did pretty well with the first flagyl pulse and managed to take 4.5 days of 250mg twice a day. After Flagyl I felt sick for a day or two, then better for a few days, and now for the last 7days I am going downhill fast. I am almost back to the near-invalid state I was in before I started CAP and when I took my break. Damn, I am going to have to slow down again and maybe take another break. I have two questions:

#1) It seems like I may need to stop again and take another break or at least slow down.

How bad is it to start and stop for abx resistance? Its been 15 months and I have already taken 2 breaks with both breaks lasting about a month. Can I do it again?

I have already decided to cut back down on NAC (dang it), after a few days of lower NAC doses, if I don't get a little better should I go cold turkey on abx and start back up slower in a few weeks?

Or maybe continue to take Roxithromycin which seems to be easy for me and just take a break from Mino, and of course flagyl?

Or maybe continue to take Roxi but cut Mino in half (100mg in the am only)?

I am so discouraged that I am having to go so slow.

#2) I have also developed a new additional symptom that has me worried. I would like to hear if anyone else had this, and if it seems related to die off and if it goes away:

It is this weird intermittent vibration in my left neck and shoulder that comes and goes and lasts anywhere from 5 mins to an hour. It started about a week ago for once or twice a day, and is steadily and quickly increasing to 30 times a day.

Looking up online, mainstream (not CAP related) medical pages say that "shoulder vibration" is a sign of nerve damage usually caused by vibrational work (like running a jackhammer). The solution is to stop doing whatever caused it and to apply heat, which I have been doing. But most websites seem to indicate once it starts, it will never go away and the best you can do is try to keep it from getting worse. I am hoping that if it is caused by die off, it will in fact go away when nerve regenerate.

I don't do any vibrational work so I don't know what could have caused this except die off?? One site said it could be due to a pinched nerve in the neck, so I am thinking maybe a new lesion in my upper spine?? As usual, when I get a new symptoms with CAP... I immediately go into this anxiety mode of trying to determine if the symptom is die off or worsening MS in spite of abx. I am in that state now. :(

Does anyone remember anyone else having this? Maybe I had a large bacterial load in my left neck lymph nodes or spine and this is a good sign that... having changed to Mino the abx has gotten into those cells and is lysing a pocket of CPN there inflaming the nerves for a short time? Any info on neck and shoulder vibration would be greatly appreciated. And it is truly a "vibration". Not hot or cold, no pain, no cramping, (actually feels kind of good - but not right at the same time). It doesn't seem like muscle involvement. It feels like just under the skin, maybe fascia or maybe the nerves themselves... vibrating at a high frequency. It actually feels like ultrasound or a low setting continuous TENS stimulation that is so low it does not affect the muscles.

Other than that, my MS (or die off - can't tell which) has come back with a vengeance. Brain fog so severe I had trouble adding 13 and 16 the other day. And then to make it worse, I sat there trying to do it for almost an 30 mins... thinking to myself, "I can do this", and not remembering I have a phone with a calculator right in front of me. You just gotta laugh at yourself some times.  My balance is way off. I have put away those 1.5" heels I bragged about wearing a few months ago.

Oh well, its a roller coaster. I did feel better (almost normal) for a few weeks when i took that break. So although many days I get depressed and think CAP isn't working, then I come back around and remember I am improving. I think!! Man, I can't tell. It is just so dang slow. Abx for a year gave me a few weeks of normal life in May. I hope the rate of return improves.

Love you all and sending healing, strong, peaceful and joyful vibrations your way... radiating from my shoulder, haha.

Much love and strength,

Toliveagain

Toliveagain, David always advised people not to stop all antibiotics, but just don't pulse if you are going through a really tough period. I would suggest going back on doxycycline but just taking one tab a day plus the roxithromycin full dose.

Lots of people do have a hard time taking metronidazole, which is why David chose doxycycline. Antibiotics were after all, his speciality.

Talking about vibrations, I remember watching David's vibrations, I think during one metronidazole pulse. It was like something was living under his skin but it must have been a muscle in his chest. The thing seemed to run up his chest on the left to his shoulder and then run back down after about a minute. He said that he could feel it but it caused no pain. I should have gone round to his back to see if it was back running down it! I never experienced anything like it and David only experienced it during one pulse.

Sarah