Help! First CAP reaction

Hoping that some of you may have some sage advice!  Started the CAPi in November, NACi (up to 1200 2/day), then doxyi 100 mg 1/day, then azithro 250 mg M, W, F). Last Sunday upped the Doxy to 100 mg 2/day.  Throughout this had no reaction until yesterday, when I experienced mostly gastointestinal problems (pain, discomfort) as well as pain in lower back and neck.  Felt sick enough to go to bed.  Unless a result of a tummy bug, I suspected perhaps porphyriai.  Last night I took 5 chlorella (1000 mg) and this am. took 2 activated charcoal 250 mg. for the first time, keeping it low until I see how I tolerate it.

 

1. Does this sound like porphyria symptoms?

2. If it gets bad like yesterday (and I don't want to miss work), is it advisable to ramp back down on the doxy for a few days to 100 mg/day or is it not a good idea to go backwards?

3. Is charcoal the best remedy if porphyria is my problem or are there other non-prescription moppers that others have found very helpful?  How much and how often do people find is needed of activated charcoal to moderate the symptoms without ending up with constipation problems?

Thanks for helping!!  Regards, Len.

Comments

Chitosan UD available from

Chitosan UD available from http://www.wholehealth.com/< has more absorption power per dose so be sure to look at the amount on the brands that you consider and read the product information at the website above regarding it's use.  The fact that it is over the counter is a plus.

  Cholestyramine for me in intermittent use has been the best choice but do consider your personal bowel patterns, those who have any tendency towards constipation are a risk for increasing those concerns.  Extra fluid should be taken with it beyond what is used to desolve the powder in any case is what I found helpful. 

All that said I have never had any lack of bowel motility if anything I have very quick bowel transition time and therefore had not problems with Cholestyramine.  You can read my full description if you take the time to read all my blogs.  After I discovered it my die off porphoria disolved and my quality of life improved amazingly.   There have been many  discussion here on the topic with lots of imposing views.  Look through the forums and you will find them both pros and cons of peoples experiences and theories.

As for charcoal, I could never take enough of it to make a difference and I found it nauseating for me.  Many folks are OK for it.  I also found it more expensive dose per dose than the OTC Chitosan UD.

Wishing you much success with your treatment.     Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Chloestyramine is good at

Chloestyramine is good at mopping up porphyrins, but causes constipation in me. Garden of Life DetoxyFiber helps me.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Len O - re your comment in

Len O - re your comment in your sig " Still believe it may the cause of my IC".... yes, CPNi is believed to cause I.C.: 

Read:

http://www.ic-network.com/newsroom/vanderbilt060601.html<

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Thank you Maria, Katman,

Thank you Maria, Katman, JeanneRox and Lala for your helpful replies!  I am not longer fearful of getting through the day.  Added glucose and Charcoal on Sat/Sun and the pain and nausea subsided so was able to go to work today!  I am hopeful and feel a little more confident now that I've gotten through my first reaction.

 

And given what I'm hearing, I will avoid ramping down the doxyi since I should be able to mitigate the reactions with moppers without having to go backwards and risk losing traction or worse.

Again, many thanks for your support!  It's always scary when you experience something for the first time and don't know if it is going to end!!  Regards, Len

Started Wheldon CAPi Nov 2010 for interstitial cystitisi suspected to be caused by Cpni. Now on all supplementsi, Doxyi 100 mg 2/day, Azithromycin 250 mg M,W,F, one complete Flagyli pulse completed.

Sorry Jeanne, but I think

Sorry Jeanne, but I think doxyi every other day perfectly creates resistance. Doxy stays in the body approximately 18 hours, so the gaps are too long. That is why we are taking it twice daily, not only once. Fortunately cpni is not very vulnerable to create resistance to doxy or azi, though I would never risk it myself. We have too few drugs to fight with.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

Lala, Interesting, in that,

Lala, Interesting, in that,  there was much discussion on this in a post of mine a couple of years ago ... and others here on the site  agreed it was feasible to build up the dosage this way without creating resistance.  FWIWi, I'll see if I can find the links. 

 I agree about the half-life, but if one is  are consistent and "building" (not starting and stoping)  it should not be creating resistance.

Alternate day dosing is exactly what I had to do to tolerate doxyi; and,  and, even that put me in bed (I was bedbound the first several months of this treatment and when I added azith I started with 1/2 of a 250 mg tablet 1X/week!) 

 With Doxy, I started with 100 on M/W/F, then the next week added in a day(M/T/W/F, etc.) ....adding one day per week until I was up to 100 mg/per day, so perhaps stating "every other day" was incorrect.  When I was then able to tolerate 100/mg per day, I worked in the second dose the same way.  This protocol hit me very hard in the beginning and this is what I had to do.

And as for resistence, I think we can become resistent,...   I recently switched to Clari, because for for me, Azit (and Roxi)  were no longer working.  There are posts here on the site on that topic as well.    I'm not an expert just going on what has been input here previously and others experiences/suggestions.  You may have actually documentation to the contrary, I don't know..... Much of what I am reflecting on and have bookmarked was input by a former member "Daisy".

I could be totally wrong, but it did work for me, so I will "agree to disagree".... Undecided

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Len O,  Keep up with the

Len O,  Keep up with the "moppers" (charcoal and chorella), lot's of vitamin C.  Your reactions appear "normal"  and probably have kicked up a notch since adding the second dose of doxyi.  But 2 capsules of charcoal is not really enough.   Some like Chorella, Chitosan, or even a script for cholestyrimine.  (Google the site for discussions)

It's not a problem to back down.  Try doxy  every other day for a while, just be consistent  do not stop/start.   I had to build up that way.  You will not create resistance, you are just building your tolerance up, especially if you are in position where you have to work and cannot be incapacitated.As for porphyriai, yes Glucose can help, I chewed a lot of Smarties candies.  You may have already seen this link but it's quite helpful. "Reactions and Remedies"    <It may not technically be porphyia... may just be die-off /toxins.  I had quite a few gastrointestional issues so be sure to take plenty of pre- and pro-biotics for the friendly flora.

It took me a while to differentiate porphyria symtoms from other... we learn as we go through the experience here. 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

LenMy mopper of choice has

Len

My mopper of choice has always been charcoal.  I always took twelve capsules.  I took it every day for several years, always two hours after eating or pills and two hours before.  It needs that window of four hours to be effective..  I would never cut back or stop unless absolutely necessary.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Len, try gluccose to see

Hi Len, try gluccose to see if it helps. (For porphyri). It helps   lot.

Best Wishes,M

Sorry for my spelling, my computer is broken so problem with writing.

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid">i.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life