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Lest I forget...
By kitkat2
Created 04/23/2007 - 4:07pm

Just a few updates here. Still delaying pulse 16 as I continue to have bothersome parasthesias in my weaker arm/hand. Still cannot cup my left hand very well--almost seems to come and go. As per the trend lately I have increased from 2000 to 3000iu's D3 each day and have noticed much more spasticity--hardly slept last night. Of course, I forgot my cal-mag last evening...oops! The restless leg thing was quite annoying, however I had doctor visit today regarding all of my psych. meds. I know the wellbutrin SR makes me feel drugged and agitated all at once, but it successfully kept me from just wanting to sleep all day. I rarely need a nap anymore so will begin decreasing it very gradually, and the same with zoloft[vitamin "Z", I call it--lol] eventually. Those two meds alone have helped mood, but have made ambulation almost impossible. I am excited to see how it goes. Hopefully my working theory will hold true and will be less spastic/more ambulatory over time. *Note: While driving today, I noticed an outdoor flowermart being erected. Before ms, I LIVED outdoors, and each spring would buy seedlings for my garden. Two yrs ago[before CAPi [1]], I had no energy for that, one year ago, still no energy or desire, but today, if it had been open for business I would have gone in. For me, I measure my desire to do my favorite things again to realize improvement. Who knows...maybe tomorrow I'll be spastic and exhausted, but it was a really great feeling. -kk2

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Wheldon Protocol for rrmsi [2]i [2] since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi [3]i [3]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Hi kk2         I

Submitted by farandwide on Mon, 2007-04-23 16:49.

Hi kk2        

I hope you enjoy the spring time as much as I do.  It's my favorite time of the year though much like you, I have trouble getting around and enjoying it fully.  Still, it's not something to miss if you can help it.

With respect to your parasthesias, I wonder if that comes in the form of itching or how it manifests itself?  I've had extreme itching at times, which I've chalked up to porphyriai [4] as that is one of the symptoms.  It's been so bad that I would bleed and still itch.  I learned not to give it a thought though; to grin and bear it (the itching not the scratching).  It's now to the point where I'll still itch but it won't be anywhere near the severity that it's been before and much more ignorable.  That's one f the subtle improvements I've had, hopefully you've had something similar.

I was also wondering with respect to your sleepyness/drowsiness--I have a friend who uses a drug called provigil to combat this symptom of MS.  I had never heard of it and apparently it's used more commonly for narcolepsy to keep people from falling asleep.  Maybe that would help you as well, at least until the CAPi [1] got things back into order?  It may be more effective on you than the WellButrin, without the druggy feeling or the interference with feeling ambulatory.  My friend gets around very well while on it.

all my best

John

RRMSi [2]/EDSSi [5] 4.5 on Wheldon Protocol (naci [6], doxycycline, azithromycin, metronidazolei [7]) since 04/12/2006

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all my best

John

RRMSi [2]/EDSSi [5] was 4.5, 5, now 6 on Wheldon Protocol (naci [6], doxycycline, azithromycin, metronidazolei [7]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [8] 300mg/daily 03/17/2008 stopped 05/08

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Alright, you two, whether

Submitted by Sarah on Mon, 2007-04-23 17:26.
Alright, you two, whether its tingling, pricking or numbness it will eventually be gone, although in the interim it can reoccur when you least expect it, in the same way that KK2's hand cupping comes and goes.  At first with my right hand, I couldn't do it at all, but it didn't just come back and stay.  The good thing is it came back when by conventional neuroi [9] wisdom, it shouldn't have. 
 
Now, psych meds, I have never taken any but what I find absolutely the best thing for not falling asleep is 200mg of Co Q10, lots and lots of oral B12 as methylcobalamin, then maybe a touch of acetyl carnitine, maybe after lunch to keep you going until the evening.  Go to the flower mart once it is open as well, and buy something, plant it, then watch it grow.......Sarah
 
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi [10].  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [11] in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi [5] was 7, now 2, less on a good day.

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No one has ever used the

Submitted by Michele on Tue, 2007-04-24 02:05.

No one has ever used the term parasthesia to describe what is wrong with my legs/feet, but having looked it up on wikepedia I can say it better describes my symptoms than simply peripheral neuropathy, especially since it explains the transient nature of some of the symptoms and the feelings of swelling as if your legs are going to burst, even though there may be only minimal oedema, it also serves to explain the peripheral neuropathy.   I also get the itching that John describes and that is something completely different, much more 'on the surface' than the other feelings/symptoms.  Both ca be explained by a Cpni [12] infectionsi [13] though...

Thank you KK2 for bringing it up.   Its amazing what we learn here... I hope you can make it to that new flower mart shortly if it is within easy reach. You are right when the mood lifts, its a good sign of renewed health and well being.

Michele: Wheldon CAP1st May 2006 IBSi [14], sinusitis, alopeciai [15], asthmai [16], peripheral neuropathy. 26th March 2007 continuous Flagyli [7] at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi [2] Cap Started 16 March 2006

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Michèle (UK) GFAi [17]: Wheldon CAPi [1] 1st May 2006. Daily Doxyi [18], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [2], At worse EDSSi [5] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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[4] http://www.cpnhelp.org/glossary/term/175
[5] http://www.cpnhelp.org/glossary/term/171
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[8] http://www.cpnhelp.org/chlamydia_pneumoniae/anti
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