MediTest
Submitted by forumnots on Mon, 2007-11-12 09:34

Happily I can report nothing too dramatic.   Friday evening had some very weird jolts of electic shocks in my left hip and then in my left foot.  Glad I had read on here that was a possibility so the weird stuff doesn't freak me out too bad.  Now it's more of an out of body experience of "Hmmm, that was odd" and keep on going.Wondering though.  Friday I was feeling tons of energy and when I would get done with burst of energy of cleaning the house I was physcially shakey or yesterday when I walked up the stairs a few times to put up clothes I would feel "odd".   I thought maybe it was the glucose thing so I grabbed a 7Up and felt better in 10 mins.   Does it usually manifest in "shaky muscles" feeling of muscle fatigue and out of breath?   Guessing I better stock up on sports drinks but I hate the calories, is there a particular one that's better than the others?When I begin to feel bad, NAC flu like or just sore all over I do not want to drink water or anything and have to make myself stay hydrated...but yesterday I was dying of thirst and couldn't get enough and wanted a Cherry Limade from Sonic but beat the temptation and went home to a complex carb.  But both times I felt this way I immediately got a headache after eating...and last night it kept getting worse to where I had to take something pretty strong for it, crawl in bed whimpering and lay "real still" as I tell my 7 yr old. Will a Vit C flush help the quick fatigue or should I wait for other symptoms? My legs look like my mother's did at 70 yrs old after being in ICU for weeks.   I'm hoping that the sauna might help (supposed to be here this week).   I am going to take some pictures for documentation of just how weird it looks. Woke up today with brain fog so bad that driving in to work was a bit frightening...auto pilot type of thing but not sure if it's the "bugs" or the pain meds I took last night.  Taking the Doxy is becoming harder to do without nausea, even with food...another interesting event.  Just wanted to document as I know how fast I can forget the details and wonderings I experienced.Lisa 

Hi Lisa,

I have been diagnosed with ms for 37 years.  I have an appointment with my GP on Dec. 17th and plan start the CAP after the holidays.  I apprecate your documenting your early experience with CAP.  I feel a little leary of the die off symptoms and how disruptive to my life this might be.  I guess a little discomfort and nausea is tolerable when you know these are symptoms of healing.  I have found that a few 1-2 drops of clove oil in a half glass of water has helped me with nausea due to unknown causes in the past.  I don't know if it will elp with the nausea related to CAP but it is worth a try.

Tina

 Tina-MS 37 years;EDSS 4.5   1/1/08 Wheldon CAP; Azith 250mg 3 x a week; Doxy 200mg daily, NAC 2000 mg daily, started Flagyl pulse 4/14/08. 

Tina,

 Thanks for the clove oil tip, I'll give it a try.  I was leary of the die off symptoms as well but based on what I've seen other's experience, mine are minor and I feel very fortunate up to this point.  I think if I didn't work and could rest when I wanted too and take it easy I wouldn't fret too much.  I've explained it to some friends, it's like chemo--you know it's not going to treat you well and you're going to feel like crap, but it's something you need to do.  You can't get better until you face the demons and I refused to continue living my life the way it was.  Having a plan is so much better than just existing and hoping things get better.   Good luc with your GP appt, educate yourself like crazy on this site, get your supplements started and the NAC slowly to see how your body will react and reach out when you need us!

Lisa

Aug 07 -  EBVi/Mycoplasma/CFS/FM, low NK cells. CAP 10/3 Amox 500mg 2x/NAC 1200mg.  11/6 NAC 1200 mg/Doxy 100mg x2;Azith 250mg MWF

Aug 07 -  EBVi/Mycoplasma/CFS/FM, low NK cells. CAP 10/3 Amox 500mg 2x/NAC 1200mg.&nb

I've done the crawl into bed whimpering thing.   I don't any more and have not felt that bad for a long time.   But I still feel nauseous at times taking the Doxy, I'll go long periods with no nausea and then for no apparent reason I get it back, usually accompanied by heartburn...

I hope it get better soon, as I remember the first  couple of weeks on Doxy and Azi and the first 7 or 8 pulses were the most difficult, after that things were much more tolerable.

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Glad to hear you are sticking with this in spite of the reactions. 

Ginger is also good for nausea. 

I was not having good luck with the charcoal, vitamin C, etc., so based on a comment that Jim K made in another posting I started taking the "bile acid sequestrant" WelChol (others use Questran which does the same thing) and it made a world of difference.     

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zith (3 x week). First pulse metronidazole 11/2007.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Just an FYI to this thread-
There is a product that I use for nausea called Ginger Trips made by Solaray.  It is a chewable wafer that is like gum.  It really helps me and I get it at the Vitamin Shoppe.  Not easy to find elsewhere, I have found.  The company's phone # is 1-800-683-9640 or www.nutraceutical.com if you can't find it at a local store.Lori

Minocycline 100 mg QD, NAC 400 mg QD, vitamin B12 injection weekly, various supplements, anxiously awaiting appointment at Vanderbilt Dec 17 so I can get started on full protocol.

 Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly