It's been a while since my last entry, but I've been so busy trying to keep a normal life together. My progress through the last few pulses gave nothing very positive to report. Each pulse was accompanied by broadly similar effects - an upset stomach, an increase in the burning feet and restless leg symptoms, which tapered off towards the second week, and serious fatigue, which was always present. In fact I seem to have slept for most of the previous four pulses, perhaps I needed it.
After each pulse, the small increase in energy and function caused by the abxi diminished and by the third week all symptoms returned to just about default levels. The only windows of improvement were approx 3 or 4 days before starting the next pulse. These consisted of a precious few days of not feeling so bad, less pain and less upset stomach episodes, so overall it was not a positive time. The one saving grace was that nothing got any worse.
Each pulse has had a clearly cyclic nature to the die-off effects, the most visually obvious of these has been the coating which has grown on my tongue. After pulse 4, this was thick and yellow and it gradually decreased until the next pulse. The thickness of the coating and the length of time it has lasted has diminished with each pulse. With this pulse it has decreased significantly.
However, now to the good part, what a difference one pulse can make. I have now had 7 continuous days of improved walking, more than ever before! The slapping action when walking, made by my right foot drop, has just about gone. Yesterday I also managed to run (moderate pace) upstairs and down, for the first time in a long time. Is this the start of real improvement?
Onward and upward
Robert - MS for 16yrs. CAPi since Jul 07, NAC 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli 9th pulse.___________________________________________________________
Robert - MSi for 16yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli 9th pulse.
Congratulations!!
Congratulations!! Hopefully now you will start to see more and more positive things happening.
Lori
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Ah, what you are 'hearing'
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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
robert d. This is the best
robert d. This is the best news I have heard in such a long time. It renews my hope and I am sure does so for many others who are suffering.Hanging in is oh so difficult. We are all so different and we all possess our own unique set of experiences and life circumstances.
YOU ARE WINNING!!!!!!!!!!!!!!!!!!!!!!!!!!! I am so happy for you!!!
Keep us posted with more good news, always!!!!
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diagnosed MSi Jan.2000 , diagnosed chronic neurological lyme disease Nov.2002.
Robert D. - this is
Robert D. - this is wonderful news! I remember that slapping sound; I can't wait to go back to it after the slush drag of the Mummy walk. And running up stairs -- wow! Just fabulous. Congratulations!
Nancy
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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 - 200 doxyi; azith MWF. 5 pulses.
Robert, great news and of
Robert, great news and of course we have all experienced the vagaries of different pulses, but you are right I certainly see a cyclic patters which is unique to me. There is also the problem of different loads of Cpni and sometimes also the areas of the body which are worst affected.
For example, I am sure that my daughter's load of Cpn is not as great as mine, but what she does have is in such a sensitive area of her brain that it affects her in many way and to a far worse extent than my heavier load does me.
When we pulse I get nauseous, fuzzy headed, tired, achey in joints, face and gut, have very dark urine and suffer from the awful taste to a serious amount, whereas she gets little taste problems, no pain but serious balance, ambulatory and fatigue problems as well as nausea and loss of appetite.
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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
Robert - This is how
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Robert, Congratulations!
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.
hey robert,congrats on your
hey robert,
congrats on your recent window! You are killing the beast...Keep on going!
That drop foot may turn into you tapping your foot in your happy dance & not because of RLS or MSi!
Thanks for the update.
r
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08Hi Robert,Your great news
Hi Robert,
Your great news is an inspiration for those of us who are waiting for our first sign of progress. Thanks for sharing.
Brian
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ExRacer - MS dx 2002. EDSSi: 6.0. NAC, Doxyi, Azi MWF, Recommended supplementsi. Completed Flagyli pulse 8 on 8/08/08.
Hi Robert,
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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.
Robert, wonderful for you
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Mary Ann
SPMSi. Dx 1991. Weldon CAPi; 3/08 NAC 2400, Doxy & Azith. 3rd metroi pulse 7/27/08