Cpnhelp.org

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CAPi since 11/06 for Cpni, Lyme, Bartonella, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

I would have the question that is it possible that i have the same sort of attacks always after flagyli pulse? I feel good while on flagyl, i feel good a few days after too and then about 5 days later i am sweating like a horse, air hunger during nights. Why always a few days after pulses?

Azith250,doxy200,NAC2400,Flagyl (5 days) 

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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

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Chris- it is, of course, possible these will worsen porphyriai because they increase liver load, especially rifampin. Rifampin can also increase this because of bacterial kill and dump of sequestered porphyrins. So if porphyria is a problem you should be cautious and keep the moppers and glucose up. Glucose especially will help limit the hemei production in the liver and thus lower the porphyrins.

veressv- what you report is common here, and is likely due to that dump of intracellulari porphyrins when cells undergo apoptosisi and lyse releasing their contents, combined with the inflammatory immunei clean up processes that also tend to have a delayed effect.

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

Chris -

My husband has had some severe bouts of porphyriai AND he's been on several known porphyria inducing drugs including Rifampin, Bactrim DS, etc... While not pleasant by any stretch, these medications have been important to his recovery.

Sorry to say that exercise for patients on a CAPi can be a potent inducer of porphyria.  Dr. Stratton reports on this in his patent.

To use the necessary medications to treat my husband's illness, he has had to back off some on exercise.  This is a bummer to him but it has helped the severity of the porphyria.

When he does exercise, I try to give him a 1 to 2 of the 4 gram glucose tab every 15 to 20 minutes of exercise which helps immensely.

Best of luck

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

I can't find where Dr. Stratton mentions this about exercise promoting secondary porphyriai in his patent???

Wherever it is, I need to find it and e-mail it to my doctor, immediately.

We are in the middle of deciding whether or not I need to keep my home PT case open. It has been a nightmare, so far! Must remain mobile to rid myself of edema, but had to fire the PT (long story but doctor is on my side with it, even though she reported me as being non-compliant). Have requested another PT, but am now wondering if I am making the right decision.

Am also wondering how I will possibly be able to fatten myself up, without consuming any of the milk products that he warns about, in his patent, too. Am now down to 93.6 lbs...the lowest that I have ever weighed in my life! Am also having pain in my jaw so can't chew too much, either.

Minai -  Sorry things are so rough!  I am sending you loads of good vibes!

I thought I remembered the bit about exercise and CPNi and secondary porphyriai from his patent - perhaps it was from one of his other articles or interviews...

The rationale if I remember correctly is that CPN steals ATP from the cell and that since exercise is also a heavy user of ATP this may leave cells at risk for incomplete hemei and then results in porphyria. 

For my husband, when in the midst of a clear porphyria attack, I severely restrict his exercise.  Otherwise on a day to day basis he exercises although no where near as intensely as he'd like.  When he is exercising more vigorously, he takes 1 to 2 of the 4 gram glucose tabs every 20 minutes and this seems to help things stay in balance. 

We walk a fine balance on exercise.  He has to have it to recover but we have to moderate the intensity to help control the porphyria. 

You might consider keeping up with the PT and then take some glucose to minimize the porphyric effects.

It's also difficult to get well when your body is in a starved state.  This alone could make porphyria worse as in a starved state, the body is cannobalizing glucose and ATP anywhere it can find it.

My husband dropped at one point to a very emaciated 143 lbs.  I used shakes at the time to get his weight back up. 

For the shakes - Mixed several tablespoons of coconut oil (very good fat), several tablespoons organic nut butters (almond, macadamia, cashew) plus some frozen organic fruit and some Rice Dream in a blender.  Amazingly it was very tasty, easy for my husband to swallow and I could easily get 2000 calories in one shake.  You could also add some powdered glucose to the shake for more antiporphyria measures.

If you get desparate - another option - although not the most pleasant - also not the worst - is to talk to your doctor and to get a NG tube and pump and get your nutition auto delivered to your stomach. 

I would bet if you can get more complex calories into your body it will help with the porphyria.

Don't know if any of this helps but throwing it out there...

Again - sending you loads of good vibes !

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Thank you, Daisy! Am sending as many positive thoughts as I am able to muster to you and to yours, too!

My mother has just arrived to help feed and care for me. Will print out a copy of your suggestions for her, too. Hopefully, no NG tube will be needed. But am glad to know of the option, regardless of its unpleasantness.

I did a word search of every one of Stratton's articles and patents for "exercise." But still haven't found it mentioned by name. So, maybe it was his article about how CPni steals ATP that you were thinking of. I can see how this applies to exercise. You are remembering his rationale, correctly.

Great to know of your experience with your husband, the exercise restriction and how you've used the glucose. We do have all of the ingredients in your recipe, so will have my mother prepare it...as I have been unable to do any food prep or cooking.

It most definitely has made me sicker being in such a starved state...

Doctor is now suggesting Plaquenil, since I wasn't able to handle steroid bursts. Something you've tried with your husband, or, no? It is mentioned in the patent...

I think that I will see how it goes with a new P.T. The one that I fired was treating for M.S. relapse, nevermind that relapses are rarely bilateral, nor do they last for months. She was uncompromsing about using a quad cane, exclusively, in spite of balance problems and club-foot-like edema. Ignoring the fact that I couldn't even lift it and was falling down and being injured, because of it. But, it was I who was uncompliant?! I am now using a rollator and doing so much better. Can now, get to the kitchen for food (which was a major compromise to eating) and make it to the stairs to get to the bathroom, in time, without having to rely on a female urinal, instead. But, if the new P.T. turns out to be as uncompromising, I will have to have the case closed.

Thanks, again. for sharing all that you have learned/continue to learn, in caring for your husband!

--Minai

Daisy, I can now highly recommend your coconut oil shake recipe. The only thing that I am a bit concerned about is that it may contain high amounts of arginine. I would like to avoid another Shingles attack, but don't see how this can be done if one must avoid dairy products/lysine. But, then, I suppose that's what Lysine supplementsi are for

Am also searching for Protein drinks that are soy-free. NESTLES does make some.

The visit with my new PT went well. because my BP was so low, 86/40, all she had me do was some dancer stretches and strenghtening exercises, on the sofa. Now, that I can handle

Thanks, again!

--Minai