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Cheese with my WHINESubmitted by Kimscupoftea on Thu, 2008-03-06 11:21. Everyone please accept my apology for my falling off the earth for the past month. I have ALOT to bring you up to speed about. My downward spiral first started (as I noticed) when I did a "header" into my Docs coat rack. As we all have this happen from time to time,we get back up off the floor,adjust ourselves and act as if nothing happened. WRONG!!! The preceding weeks were very trying for me. I was as clumsy as a kitten.I was spilling my cereal on the floor,then the entire 1/2 gallon of milk,you name it i was dropping it. My left hand was somewhat useless to me. I broke a family piece of pottery-smash! I was having such pains in my knees and RT calf. On and on WHINING!!!!!! How do I feel? I cried!!!! What the heck is that all about? I'm not a pity party person but found myself very vulnerable to my emotions. I will complete pulse#2 tomorrow and will start the Pyruvate on Monday. I keep telling myself,or at least Ken reminds me I'm getting better......and the sun will shine tomorrow too!
___________________________________________________________ RRMSii since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax »
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Kim, You've still got your
Kim, You've still got your sense of humour... That's the way it goes, unfortunately and you are doing an fairly agressive protocol so its bound to be difficult in the beginning. But Ken's right you might not feel like it but you are getting better.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
Emotional sensitivity got to
Emotional sensitivity got to me very early in this treatment, I remember crying gallons for the people of Burma during the priests' protests when it was shown on TV. Again anything about animals, children or trees, for goodness sake, would have me disolving into tears even if it had a good ending. Now I think that a little of that was displaced grief for my own condition, as well as concern for the plight of the subjects.
Of course all of this saintly behaviour was balanced by the short temper that was to follow!
.New Forest, UK. Progressive MSi dxi 12/06 LDNi 3/07 CAPi 6/07: Wheldon version.
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #30...I can because I think I can.
Kim, if Ken didn't think
Kim, if Ken didn't think you were getting better he wouldn't be so lighthearted over at ThisisMS, so you must be. Gone is the straightlaced accountant and in is a new, humourous person.
Over the years Sriram has changed his protocol a lot. At first he was reluctant to use flagyli even out of the trial environment, whereas Stratton latched on to it very quickly. Now he goes headlong at the stuff and prescribes very long pulses very quickly. Also he believes in using the non immumomodulatory rifampin straight away. Even after six months or more changing to this threw me, being used to taking two very immunomodulatory abxi: doxycycline and roxithromycin. For this reason it is no wonder you feel as you do.
A few years ago, David prescribed rifampin as an alternative to the more expensive roxy for some people. They were the people who found the treatment the hardest going without exception.
Now, if you found the periods when you cried the most because of your clumsiness were when you were on a pulse or soon after, blame the flagyl, wipe your tears and laugh. Well, do so anyway because your pulses are so close together you barely have time to recover before you start the next one. You will look back on this period in the future and then you will certainly laugh together.........Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Kim - Not that this is a
Kim - Not that this is a ton of comfort but it sounds like you are experiencing classic FDA package insert Flagyli sequelae.
The Flagyl PI side effects are described among many things as peripheral neuropathy which would include tingling, pins and needles, numbness, feet feeling like they are asleep, stumbling when you walk, feet throbbing or cramping at night and sudden sharp shooting pains (seems there is a crowd of folks here who have reported the foot trouble recently).
Ataxia is also listed as a Flagyl "side effect". Ataxia means lack of coordination. Brain and muscles not linking up - leads to clumsy, off balance, muscle weakness(hypotonia), slow movement.
Now are these really Flagyl negative affects OR as I prefer to think in the case of MS - positive Flagyl effects.
Could also be that the Vandy protocol is grinding away on a lesion as described below from a Ntl MS pub:
Like euphoria, MS lesions can cause a condition called pseudobulbar affect, or laughing and/or weeping. People cry, or laugh, for very little or no reason and have difficulty stopping. They know that the crying or laughing is out of proportion to the situation, but cannot help themselves. This symptom occurs in other brain conditions such as stroke, and usually can be treated effectively with medication.
Bottom line - Either way - you probably win - something is getting worked out of your body that shouldn't be there!
I hope you see miraculous improvements in your physical function soon from the antibiotic grind !
Daisy - Husband on CAPi 5/07. Minoi, Roxyi, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone,
Novantrone, Doxyi, Azithromycin, Flagyl___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
deleted double post
deleted double post
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
thanks for the post Kim; you
thanks for the post Kim;
you are funny! "taking a header" going ash over tea kettle. Remember the moppers, you might want to increase them as a prevention approach; especially with a more aggressive protocol.
I have kept on with the Chitosan & it is working well for me. It has allowed me to cut the glucose back a bit, which is a great thing because of weight gain for me.
So glad you still have your sense of humour girl!! Keep getting better & having these reactions, for a little while anyway. We know the protocol is working!
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 7th pulse 2 X 375 mg 2day+
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CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Sea Kelp,Iodorol, Inositol, Chitosan, L lysine Pulse#25 01-27-10 1gm Flagyli/day-5 days
ruthless,are you referring
ruthless,are you referring to moppers as charcoal. I'm taking 10 260mg a night. I've noticed a funky stool the next morning. If this is an indication of getting the bug out,i'd take the whole bottle!
16yrs RRMSi-2yrs SPMS. Rifampin, Azithromycin, Copaxone,
Avonex,Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5. Can't wait to lose brain fog & wear real girl shoes.___________________________________________________________
RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax
FlagyliCopaxone,Avonex,Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5. Can't waLOL, charcoal is one & I am
LOL, charcoal is one & I am quite familar with releasing the toxins!!
A whole bottle might be extreme, lol...I can't imagine drinking enough water so one wouldn't end up constipated! when I first started experiencing the protocol, I was burping charcoal dust, LOL
I use glucose, Chitosan, complex carbs & I have just bought some yaeyama chlorella powder to have in the wings, along with the charcoal, which would be my final last resort, lol
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 7th pulse 2 X 375 mg 2day+
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CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Sea Kelp,Iodorol, Inositol, Chitosan, L lysine Pulse#25 01-27-10 1gm Flagyli/day-5 days
Kim- you have a kick-butt
Kim- you have a kick-butt aggressive protocol, so... it appears to be kicking your butt! Sorry, whining allowed here. It may be worth trying cholestyramine instead of charcoal. Some folks have found it mops up the porphyrins and endotoxinsi a bit better, and Louise has even doubled the packets for each dose for really bad times to good effect. I found this also to be true. The good news: the direct link between the protocol build-up and your MSi symptoms. Hang in there.
CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
Jim, Do you need a script
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In pursuit of ABX
Don't Allow What You Know To Get In The Way Of What Might Be
Is Chitosan like
Is Chitosan like Charcoal?
If os do you have to take it apart from everything else like Charcoal?
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In pursuit of ABX
Don't Allow What You Know To Get In The Way Of What Might Be
Yes, you need a script for
Yes, you need a script for it. I don't know anything about chitosan serving this purpose. Looking it up, it is claimed as a fat and bile acid blocker, supposedly preventing absorbtion. If this works as it is claimed, it could bind and prevent bile acids with porphyrins from being reabsorbed. But I don't know anyone using it for this and have no way to compare it. I'd go with a sure thing and the cholestyramine if your doc will rx.
CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral