Cpnhelp.org

John - I'll take a stab at some of your questions: 

"each morning I wake up and take a few things before I do anything else.  I have what seems like a porphyric reaction"

It's possible that your bladder med is a mild porphyriai trigger for you as is the coffee.  If you want to PM me the drug, I'll look it up for you.  I'll guess Flomax, Cardura or Hytrin? 

Just because a drug is a porphyria trigger for those with genetic porphyria doesn't mean you can't take it if you have secondary co-porphyria but you may need to be more vigilant with anti-porphyria measures.

Reason it may just now be surfacing - for some porphyria seems to be a clear and immediate cause and effect - for others porphyria seems to build over time.  From your accelerated CAPi protocol you may have built up some porphyria that your body is still struggling to process.  Things that didn't act as to trigger porphyria feelings for you may trigger them until your body catches up.  You might try going 1/2 caff and 1/2 decaf for a while.

Regarding the gym/exercise questions, anytime my husband stops exercising, he loses function which seems to return quickly when he starts exercising again.  I also think that exercise keeps his detox organs running at a more optimal pace and that together with sweat keeps some of the toxins excreting.  Unfortunately exercise also seems to induce porphyria for him so we are experimenting with finding some sort of balance.

When you were a serious exerciser you probably achieved 3 things 1) some mild die off from elevated body temp 2) exercise boosted immunei system and response 3) more optimal organ function and hence detox/processing and maybe some other cool benefits as well..  4) putting on extra weight is also shown in clinical studies to cause inflammationi throughout your body...

Regarding getting back in - don't know if you could swing a few 30 minute sessions with a personal trainer.  Many of them operate now out of their own mini gyms located in strip malls.  You can drive up to the door and get in easily, do a quick workout with a trainer who could help you get on and off machines and then help you to your car if you needed it.  If you explain your problem, they might be willing to work with you on a very customized and doable routine to get you started again.  Once you felt comfortable in this type of setting you could return to your regular gym.

Don't know if any of these ideas helps...

^{Daisy - Husband on CAP 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan}

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

Hi John,

I have some alternative ideas for you to think about although Daisy's posts are always very informative and quite helpful when I read them so I'm not trying to contradict, just give some other ideas for you to think about. 

1.  What type of sxs are you getting that make you think/feel it's porphyriai? For ex, I listened to folks for years on the MPi talk of sxs of herx when in fact I could identify blood sugar and hormonal problems due to hypoglycemia and/or adrenal increases due to caffeine and sugar.  

I find that I have to eat with caffeine or I get horrific blood sugar issues.  I also have to limit my glucose eating to within a short time frame before I'm going to eat something more substantial or I get jittery and weak from the surge then drop in blood sugar. (hypoglycemia)

2.  As for exercise, in "The Potbelly Syndrome" it addresses exercise as something that causes an increase in stress (unless it's a pleasureable activity such as dancing) and so it would cause an increase in cortisol which weakens the immunei system. 

I think we have to be careful how we balance what we do physically.  I don't think the author was trying to say don't exercise but that it could trigger stressors which are not good.  In other words, more is not always better.

I try to increase my enjoyable activities until the day I feel well enough to be able to return to the gym, if/when that's possible so for me, riding my Harley (uses energy and muscles) or going out to hear music and dancing with friends adds to my life in a positive way and increases my activity when I feel well enough and I try not to sweat (pun intended) the inability to perform regular gym type exercise anymore. 

 

3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, 6/08 Zithi 250mg 1/wk, myco+ CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Daisy, Reenie    

Thank you for the feedback, I appreciate the info.  I know I've already read some of it before but I wasn't thinking about it and remembering those possibilities.  My mistake.  But then, it's always easier to look in from the outside then to reflect and filter out everything to get to the possibilities.

In response to Reenie's questions, here are my answers:

1 - the reactions are typical increased heaviness in my legs and more difficulty standing and walking, including balance issues

2 - it may be that cortisol was increased; however, I don't think it negatively impacted my immunei system...or....perhaps it ramped up other things that offset the additional cortisol.  For instance, perhaps more blood flow through the liver allowed for increased and faster removal of it from the blood stream?  I don't know how cortisol is metabolized so that just one though that crossed my mind...

Increasing my "enjoyable" activities every day would work against me.  What's enjoyable is to sit still and not be active.  To not have to deal with issues with walking and balance.  Consequently, that recommendation is of little use.  There are very few activities that are excercise that I would describe as enjoyable.  It's all work and all takes effort.  Just standing up and crossing a room takes effort.

That being said, I do manage to do things on occasion, such as going to hear live music.  Small venues only, no concert halls, stadiums, or auditoriums.  Alternatively, I sometimes meet a friend for a long game of Scrabble, usually about 3 hours.  Neither is excercise and won't help in that arena.

The caffeine I have is not from coffee.  I only on rare occasion drink coffee.  More likely, I drink tea but even that is not often.

No, the caffeine comes from taking a caffeine pill.  1 pill is the equivalent of 2 cups of coffee - 200 mg.  I've never noticed any reaction from it except that I become more alert and awake.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008 Stop

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all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Caffeine or CoQ10

I decided this morning to try not to take the drug I've been taking for the bladder control issues but still took caffeine, CoQ10, NACi, and grapefruit extract.  I still got the same reaction as yesterday, no difference.

Consequently, that makes me wonder about whether the issue is with the Caffeine or the CoQ10.  I know it isn't the NAC or the grapefruit extract as I take NAC many other times during the day with no effects, and I've taken grapefruit extract at other times with no reaction.  Frankly, of the two options, I suspect CoQ10 more then caffeine because it is involved in energy production (ATP) and more likely to be involved with porphyriai since it's a direct progenitor of ATP.  I think the CoQ10 might be ramping up energy production and thereby porphyria.  Makes sense to me.

So, I'm going to first try omitting CoQ10 over the weekend.  I might take it at other times but not when first getting up in the morning, and see if I notice a difference.

If I don't, I'll try the same with caffeine and/or reintroduce CoQ10 and see what difference it makes when I do.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008 Stop

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all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Without CoQ10 this morning, I did have much less of a reaction; however, I did take the male drug I'm on and did get something.  It wasn't as much of a reaction as with the CoQ10 though.

So, I'm inclined to think it's the combination of the two and tomorrow I'll try it without either one of them and see what happens.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008 Stop

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all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

For the CoQ10 to cause porphyriai via its effects on ATP doesn't make sense; it should provide more ATP, and lessen the buildup of porphyrins. But then what you experience is not the buildup, but the release of porphyrins; I suppose it could cause that (say, by giving the immunei system a boost, allowing it to kill porphyrin-laden cells), but by avoiding that you might be setting yourself up for trouble in the long run.

John, I just want to offer that nerves that are used regularly are more heavily myelinated, which is why the first time you pick up a guitar your fingers are clumsy and awkward, but after time you can learn to do some awesome riffs; as you practice it over and over the myelin gets laid down more thickly so that nerve can be faster. Working out regularly would do the same in the other motor nerves so walking makes it easier to walk. ANother thing that is natural for us is there are two types of muscle fibers fast twitch fibers like for a reflex action and slow twitch. The atrophy that occurs in MS causes the slow twitch fibers to shrink but the fast twitch fibers remain. Exercising builds the slow twitch fibers specifically off setting the atrophy of MS, thus you have more control and stability and strength. I have a hurt shoulder also and it does slow down the gym. I too have gone from going to a public gym to working out at home because as I rested the shoulder and got through the worst of the RA flare, then I got so I would fall and really reached a day when I had done the ellipse and was leaving the gym, each step was a struggle, undertaken with thought and care, and when I finally got to the car I flopped in heavily so grateful I did not fall when it seemd inevitable and said to self "this is the last time I do that" I got a thing called a "Lateral THigh Trainer" online for 99 dollars that is not quite as good as a ellipse as it does not have that forward slide motion, but the price was right and it is reasonable to store. I concentrate on lifting my heel and knee with each step to get those nerves awake See it here I put it in a doorway and hang on to the door jamb while I watch politics cause I can't do it without hanging on. On CAPi since Sept '05 for MS, RA, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

Marie- and watching the politics makes you angry enough to keep that kick going? Really good to have you posting here again with your always savvy take on things... well at least for others! Why can't we exhibit the same savvy with ourselves? Is that just too much to ask?

CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

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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

Jim we each seem to have a built in blind spot to our own treatment/care. Even the simplest things are sometimes amiss. Thats why it helps to have a community like this where you can get a 2nd opinion. Some of the best advice given here is the most obvious (in hindsight).  

Agree with Norman about the Q10 - my money is on the caffeine. Didn't I read somewhere that caffeine was not a good thing to take when porphyric??

Marie thanks for that explanation on myelination. You learn something new everyday! 

CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg . Tinii pulses 1000mg. Sauna QOD. D 8000IU. Niacini 3 x 500mg. Mel 3mg.

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Hunter: Don't think - experiment