Honestly, I have no words....
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Posted 11 November 2015 - 04:04 PM
Ok, I think I am ready to start decreasing again--but 1 bead per day this time!
Haven't had a dizzy/lightheaded spell in a couple of days. Feel a little jittery in the am with some diarrhea, but not nearly as bad now; manageable without any Ativan or Immodium.
Wish me luck!
Posted 14 November 2015 - 12:01 PM
Having a difficult morning--panic feeling is back, diarrhea, burning headache, woozy feeling. I'm now only taking out 1 bead per day starting Nov 11, so I wonder if this is residual from the original decreases? Been having good days since around Nov. 9, then suddenly this!
I also did a lot more yesterday; maybe my brain hasn't had a chance to catch up yet?
Thought I was done with this, ugh!
Posted 14 November 2015 - 12:10 PM
I would suggest that you not remove any more beads until you stabilize. Unfortunately I can't say how long this will be - your body will tell you.
You are very wise to keep it to 1 bead at a time. We have another member who could only do the 1 bead and she has been off for quite a while now.
You can do this!
Posted 14 November 2015 - 12:30 PM
Wow, you think a difference of 3 beads can do this?!
As of yesterday, I only take 42 beads total, so I guess percentage wise, it's not as low as it sounds. Around 7% maybe?
I do need to get back to Lyme treatment, so I don't want to drag this out for months...sigh.
Posted 14 November 2015 - 02:40 PM
Hm, I think my scale may have been the problem! Was re-measuring to stay at 42 beads for a few days, started counting and some caps only had 30-something beads?! I weighed before and thought 1 bead = .001 gram, but that doesn't seem to be accurate. Add to that my scale needs calibrating and I've lost the weights.
Do I get a new scale or keep counting? Obvs will count until a new scale arrived, at any rate
I'm refilling for the last time and made sure to get the exact same brand that I'm taking, so brand variations shouldn't be a problem.
Also, the beads in my capsules vary in size a little (not much, but a little), is that a concern?
THANK YOU for keeping me sane through all of this
Posted 14 November 2015 - 07:46 PM
If the number of beads is not consistent that will make it tough. Like TFL says you need to average the number of beads and drop about one bead every 3 days. Even so you may have to go to one bead every 4 or 5 days if the number of beads isn't consistent.
Posted 14 November 2015 - 07:59 PM
TFL, by "average the number of beads" do you mean open several capsules and count the beads to get an average? I did that at the beginning, I think. Not sure why I would need to do again, since I know I'm on 42 beads now and sticking with the same brand??
FH, I'm a little confused by your statement. The number of beads I was taking was only inconsistent when I used the defunct scale (which I'm no longer using) and took too few beads. Counting, I'm now at 42 beads total. I think my reaction today may have been because of the defunct scale. Should I still slow down the decrease, or can I try again with counting only (not messing with the scale?) TY!
Posted 15 November 2015 - 09:21 AM
My bad ralphi.
I thought you were still using the scale. Yes, if you are counting the beads that is fine. As far as keep dropping....just listen to your body. It will tell when to hold steady and when you can start dropping again. I reread your post and think I understand now. Sorry about the confusion.
Posted 28 December 2015 - 11:44 AM
Just took my last bead last night! I'm officially off of this drug. I couldn't have done it without your advice. THANK YOU! The panic attacks went away; I still have mild anxiety every now and then, but that could be my tick-borne illnesses saying "hi" to me. Now on to treating Lyme disease.
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