Some Suffer/Some Don't Why is that?
I am working on a plan to slowly work up to the antibiotic protocol. I have
MSi and am currently taking 100 mg. minocycline (evening) plus a long list of supplementsi etc..
Also fermenting foods for the probiotic effect as well as adhering to the porphyriai
food suggestions and other recommendations. This is a result of my three months of torture after dealing
with porphyria while on a low carb diet and taking two does of the minocycline daily.
It was horrible. What an eye opener.
I have spent a great deal of time reading and studying many of the posts—and there are many. J
Thank you everyone.
But, my number one question is—after antibioticsi--why are some people so ill and some either mildly so or—rare—almost not at all?
And yet they claim to be making continual improvements.
I want to be a low sufferer. J I understand that I will likely be ill in order to recover. But there is some concern
about the toxins etc. flooding the body during die offs of various natures. Better than MS—I get it—but tough on the body too.
I would understand the variations in bacterial loadi. This is an accepted belief—is it proven?
Is it detoxifying? Is it methylation?
Thank you for any input that you may have.
Katherine
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I think bacterial loadi and entrenchment may be a consideration, as well as where in the body the bacteria have set up shop.
The rest could be as simple as geneticsi. Some people detox more readily, some people 'handle' medications better (or worse) than others, some people are born runners and some people are born math whizzes.
All you can do is be prepared. Get your charcoal or cholestyramine or whatever, ready. Remember to drink lots of water, schedule your high-exertion days carefully, expect to be low-energy when you pulse or when you add a new med or supplement to the mix, then do it.
I found my apprehension was far worse than actually doing it.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
This wonderful site did not exist for my first year - when my suffering was pretty bad. I probably will never figure out when I began charcoal, of which I have taken at least fifty bottles, but I believe it was something I learned here. My mental fog was extreme for the first year and a half. I was also on Avonex for the first sixteen months that I was on abxi. Also, the supplementsi were instrumental in my recovery.
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.
MacKintosh,
Thank you for the comment.
Regarding charcoal etc.. I never was able to get a handle on the porphyriai--close though. I was a wreck.
My apprehension is well founded--if my response with the porphyria is indicative of future treatments I will be shut down for months.
I can't think of one day in my life that I want to be sick.
So, working on preparing my body/life in the hopes that I can minimize the effects of the antibioticsi.
Seems to me--and some reading that I did today would agree--that if possible--it is easier/better for our bodies if our detoxifaction pathways are not over loaded. This is indicated--at least in part--by our ill response to the antibiotic. But--we understand that the Herx reaction is a normal response which should bring great promise. :)
I am beginning to think--drawing on my experience with autism recovery--that I need to work on my detoxification pathways--to start.
To start. lol My list is massive. But I am feeling much better.
Thanks again,
Katherine
.
Katman,
It is an incredible site--isn't it?
Suffering --I feel like I have done enough for my lifetime. And yet I have had a pretty easy ride compared to many like yourself.
Thank you for your note. So glad to hear you are doing better and I hope to join you one day! :)
The question I have is simple but the answer is tough. Why are some folks sicker--after an antibiotic-- than others?
Some is bacterial loadi for sure. Genetics--sure. We know that methylation issues can be genetic amongst other things. But sometimes we can modiy our genetic responses--that has been proven with all kinds of illensses.
I am leaning towards focusing on the detoxifcation pathways.
Seems to me that the quicker the dead cells are out of my system the quicker I can recover from that bout of treatment.
Plus--no down side to more vegetables, cleaning up my diet, fermented foods etc.. Plus some supplementsi etc.. A goody good. :)
Thanks again,
Lorraoine
Boy, goody-good is right! I don't drink or smoke and take only prescribed supplementsi and meds and eat well.
I don't know if you are working or not, but I am working part-time and have always had to arrange my pulses accordingly. I have very strong reactions to the abxi and only last week, after 4 years, was I able to tolerate 4 tindimax and still go to work on Monday at 3.
So, for whatever reasons, some of us have to go more slowly. But even so, you keep going forward towards healing instead of fulfilling the "inevitable" downward slide that the neuros tell you of.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
Arttile,
Thanks for the note.
Goody-good. It's a great expression. :) Always makes me laugh. Some things--like increasing vegetable intake etc.--no down side to.
I am self employed and this has some advantages and some disadvantages. I like to think that it makes me more goal oriented and focused. On the other hand... no sick time here. At least not the kind that you get paid for.
Glad to hear that you could arrange your pulses around your schedule. Maybe not a perfect system but at least you could predict it on some level.
Currently I take naps in my office every day--grateful for Hulu.
I think that the pace for my treatment plan will be slow and determined until I get a better handle on the die off and porphyriai issues.
So many balls to keep in the air at the same time. Fortunately my time consuming expensive ones now live on on their own. Nice. Now that was a lot of juggling!
Thanks again for the comment.
Katherine
Katherine,
As you have probably seen in other posts on this site, chlorella as a mopper similar to charcoal. I don't think it is quite as effective but it can be taken during the day with other supplementsi and meds. You don't need a four hour window for it. I usually take six grams or so of chlorella every day.
Also, I find St. Johns Wort to be helpful for the mental side effects. It doesn't take away brain fog completely but it does seem to help my state of mind in general.
I have been trying glucose during the day, too. I don't know if it is helping or not but I have always like Smarties so I'll keep trying it for a while. :)
Started CAPi for Cpni on 11/14/10 -Doxyi, NACi, Azith, Flagyli, T3, Ursidiol, St Johns Wort, B-complex, B12, Folic Acidi, Vit C, Vit D3 (12,000/day), Vit E, Astragalus, Chlorella, Lauricidin, Creatine, Alpha Lipoic Acidi, Ascorbyl Palmitate, Liposomal Vit C
Hi Katherine
I did not suffer - not that I knew, anyway
But I did this protocol waaaaay back in 1998-2004. I had terrbile chronic fatigue, a plethora of symptoms and the highest count of Cpni that the scale went up to back then - tested at Dr. Strattons Vanderbilt Univ lab.
This site/support group did not exist and I had nobody to compare notes to except a good friend about a year ahead of me on the protocol who introduced me to this study at Vanderbilt Univ. I went by what she told me. she said that if I stayed on the meds (early Stratton protocol), and it could take a long time - I would get rid of the Cpn and get progressively better. I never heard that anyone would get sick or not do well on the meds...except my friend did mention die off and that it usually occurs when you go to bed at night and affects your most vulnerable places - for instance - she had tennis elbow and this is where she would feel the die-off pain at night and that the pain was extreme, but if she had die-ff it made her know that the organism was dying..so it was a "good thing" to have it. She told me that some people take charcoal to prevent the recirculation of toxins from the intestines back into the blood stream and the charcoal would surround the debris and make sure it got out of the body rather than getting back into the blood stream thru the intestinal wall for another go round. She did not take charcoal, but I did..4 grams, 2-3 times daily. Back then Dr. S also recommended B12 IM injections thrice weekly, which I took (this was supposedly for porphyriai) and also he said to drink 6 quarts of water daily to help the body deal with the die off toxins.
The first week on the protocol - I took 500mg zithromax on M-W-F. The first day I was sick in bed, felt flu-like symptoms and had diarrhea that would not quit. Bt the second day, I felt okay. The second week, I developed several painful boils around my bra line..they stayed there for a couple of weeks, getting bigger and more painful, then they began to drain. I figured this was my lymph glands getting rid of some of the infection. Was it? who knows? After that, I had no more pain or anything I could say was die-off. My days with a little energy began to happen more frequently and my really terrible days happened less frequently.
I would say that the symptoms began to disappear in the reverse order that I developed them. For instance, I developed a chronic cough (one of my last symptoms) in the year before I began the protocol, and this is the symptom which resolved first - within a month on the protocol, actually. The fibromyalgiai (one of my longest standing symptoms) was not completely gone until approximately 6 months before I got off the protocol. Somewhere along the line, my IBSi cleared up and my rosaceai disappeared! Something I never expected, because the dermatologist had told me I would have it for life and mine was severe.
I honestly believe that my mind, not expecting any suffering and me not knowing that there *could have* been suffering connected with taking the meds was instrumental for me. For others, this might not be the case. But more or less..I got what I was told I would get and what I expected: better and better. The other thing is that I often say that, before I began the protocol, I was so darn sick and had so much pain and so many symptoms that I could not have imagined myself feeling any worse than I did without the meds. I honestly think I was dying. I was sleeping almost around the clock and was in terrible pain all of the time. There were times I delayed by a couple of days taking the next med in the protcol when I began..and had an unusual or unexpected symptom, which, at the time I realized that I probably would have blamed on the med had I taken it. so - who can tell?
I may have been blissfully ignorant and did not know i was having die-off..I figured what do I have to lose? I can be sick and take the meds and someday maybe get better - or be sick and not take the meds and die.
One other thing I want to mention is that I took 1/4 of a tablet of flagyli at about the thrid or fourth year and had an allergic reaction to it. My face and tongue swelled, my eyes swelled shut, I was covered in hives and an itchy rash and had trouble breathing. I took it before bed and it happend within a half hour...so it was the middle of the night and I didn't want to bother anyone by calling. I took some benedryl and the swelling went down and my face returned to normal in about 8 hours. so I was told not to take flagyl again.
Good luck - it is a possibility that your early reactions will not happen again. The organism was strong when you began and put up a fight, but maybe from here on out, you will suffer minimally if at all. My best to you.
Astrodiana