I am trying to find out whether someone with rrmsi can continue using rebif while on the Wheldon Protocol. The drug is listed as immunomodulatory rather than immunosuppressant. Anyone know the answer?
Thanks.
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PPMSii-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPii 3/2/07 - Now (1/10) doing 100 doxyii; 125
There's no problem with
Good afternoon, Nancy! Not
Good afternoon, Nancy! Not everyone by any means on the "Wheldon protocol" posts here and many just prefer to keep either Wheldon or Longlands busy by writing to them. Many of these are also on betaferon or similar in order to keep their neuroi happy. I can't really see any other reason.
In the UK, no conventional therapy is given on the NHS to people with secondary progressive disease, which I had by the time avonex and betaferon became available here, but I have responded far better to the Stratton/Wheldon antibioticsi than I ever would have done to a CRAB...............Sarah
An Itinerary in Light and Shadow
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My opinion of interferons
My opinion of interferons for MSi is - well, unspeakable. I took Avonex for seventy-seven weeks and it did nothing for me except to put me in hell for twelve hours each week. About six weeks after I had stopped it I walked in to my MS specialist neurologist, lifted my right foot off the floor, stood unaided, jumped up and down excitedly and said "Look what I can do!". I had been on abxi for about fifteen months. He said "Get out, go away, and don't come back. I don't want to see you again. You disobeyed my orders.". The appointment before that I was unable to lift that foot AT ALL. Every step was with my right foot dragging along the ground. I had stopped Avonex six weeks before. Since then - that was December, 2005 - my family doctor has taken care of me and watched my progress with amazement.
So...I say humor yourself and your neurologist, if that is what it takes.
Rica
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
I assume this question is
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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
Take Rebif if it pleases you
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Ah, but if someone was
Ah, but if someone was already on betaferon or avonex, under neuroi's suggestion, but wanted to start CAPi, not under neuro's suggestion, the best thing is to keep taking both the neuro's recommendation and the antibioticsi, as the people I was talking about do. Someone might not be brave enough to risk falling out with their neuro and some people have nobody to support them in this...............Sarah
An Itinerary in Light and Shadow
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Yes, Mack, of course. Not
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
Thank you everyone. I called
Thank you everyone. I called my friend and read her all your responses. She's very thankful.
She has 21 days of amoxicillini from her dentist, 100 mg./day. Will that pass the blood-brain barrieri? Or does it have to be either doxyi or minoi? Meanwhile she's taking NACi.
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
Good afternoon Sarah!
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
Hi
Hi Arttile
It may pass the BBBi; however, amoxicillini only is effective at the EBi stage of Cpni's lifecycle. This means, it won't do any more then NACi with respect to reducing the load of Cpn.
Doxyi and Minoi on the other hand, are effective against the CB stage of Cpn's lifecycle. EB is outside the cells, floating around in the blood stream or in the plasma and fluids outside of cells, while CBs are inside the cells and eject EBs out to infect again.
So, while amoxicilin may pass across the BBB, it won't reduce the infection, only reduce the EB load she might be carrying around. Unless she does Doxy or Mino, plus another abxi to prevent resistance from developing, the load of EBs will gradually build back up to where it is now, and beyond.
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best, John
RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007.
Added INHi 300mg/daily 03/17/2008stopped 05/08. AddedWell, that sounds dismal,
Well, that sounds dismal, John. I can give her 58 doxyi tabs that I'm allergic to and she is going to try to get minoi from her neuroi based on the Calgary studies; but if she develops resistance, she's screwed.
How are we going to help this poor woman?!
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
Well, is the behaviour and
Well, is the behaviour and opinion help by neuroi's in Canada the same as those in the states, England, and elsewhere, or are they able to utilize their remaining neurons to reason clearly? What I'm asking is, would her neurologist discuss the CAPi seriously with her or is she wasting her time with that approach, much like I and every person I've known does when they try to do something similar?
It would be nice if there was a doctor in neurology who actually believed the point was to help the patient, not to rigidly follow the accepted practices. I would think that the odds of finding one in Canada are better since the system there isn't as money oriented as the system here.
In any case, the only other thing I can suggest is for her to buy the supplementsi on her own, if she has to and can.
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best, John
RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007.
Added INHi 300mg/daily 03/17/2008stopped 05/08. AddedShe has 21 days of
She has 21 days of amoxicillin from her dentist, 100 mg./day
1000 mg, of course!
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008, but still occasionally pulsing. EDSSi 0 for over 6 years.
The five abxi that I am now
The five abxi that I am now on is 500 mg Amoxycillin bidi for six months. Those who are tired of seeing my five abxi protocol can ignore the rest - in addition, I take 300 mg Rifampin bid, 100 mg Doxyi bid, 500 mg flagyli bid, and Azithromycin 250 mg MWF. This is definitely penetrating the BBBi - I can feel it. Hoarding is good - at least for me. If that would be what it took to gather my defensive weapons, that is what I would do. My recovery continues, interspersed with fuzzy days and staggery walking. But I have seen the light at the end, and it is very bright.
Rica
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
OMG Rica! And she lives!!!
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
Funny, Nancy! To me, the
Funny, Nancy!
To me, the most amazing thing is that my liver functions continue to be normal, for which I am very grateful. When I was on Avonex and Doxyi and Rifampin with some flagyli now and then, they went into the 150 range. It must be the NACi and just plain getting better.
Rica
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Rica, maybe I'm remembering
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
Dear Life (and anyone else),
Dear Life (and anyone else), please weigh in:
John says the amoxicillini duplicates the effect of NACi. Rica however takes it as well as NAC. I'm in the ridiculous position of advising my friend and what do I know? Do I tell her to take it or not?
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
So I thought when I began
So I thought when I began this. Yes, my weight is 107 pounds. I don't believe I could have survived this four and a half years ago, but when we went to the shows two weekends in a row, the only thing I dropped, only for the second weekend, was flagyli, which I went back on the next morning.
Rica
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
If I had a friend like this
If I had a friend like this I would tell her to just order the abxi over the internet while looking for a Lyme doc to treat her.Then I would tell her this is a war for her very life and as a savvy soldier she must study the enemy from all angles to develop a battle plan. She must not hesitate or waste time as the enemy forces are replicating and doing wreaking their havoc 24 hours a day.
A regular person can order blood tests from Life Extension.
http://www.lef.org
I just ordered a vitamin Di test from them. I take it to a lab and get blood drawn and they mail back (or email me the results) They even have phone counselors you can talk to about the results. You need to buy a membership but it is reasonable.
Just my 2¢
Raven
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Feeling 95% well-going for 100. Still testing + for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.for MSi and/or CFSi. Also EBVi and HHV6. Doxyi, Azith, Tinii pulses. NACi, Iodoral, T3, BHRT, MethyB12 injections, Nitro patch, LDNi, FIRsauna, methylation supps
And good afternoon again
And good afternoon again Nancy!!
If your friend is,taking NACi there is no real point in taking amoxicillini as well. They both wack the elementary bodies and whereas amoxi disrupts the bowel flora, NAC doesn't. She needs doxyi or minoi and a macrolide.
I have only ever taken three abxi and amoxi wasn't one of them...............Sarah
An Itinerary in Light and Shadow
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A tip o' the hat to you all
A tip o' the hat to you all (including skinny Rica) and hi again Sarah. So she can take my doxyi (it expired in 2008?) and try to get the minoi, but she would still need azith or roxyi, right?
I don't how she'll do this but I'll tell her. Thanks.
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - Now (1/10) doing 100 doxyi; 125
And a good thing always is
And a good thing always is Acidophilus or yogurt or some other gut bug.
Rica
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1