I did it. 10 days of 1,500 mg a day. I made it through! At least my fear of cyst busters is a bit lower now.
Based on my reaction, I still have no clue if I have Lyme. Yeah, stiff neck, but my health cycles constantly day-to-day and for the first 6 days, nothing big happened.
I'm getting really irritated with all this guessing and drug taking. if someone never took a cyst buster and has been ill for many years, wouldn't all hell have broken loose like it did for Mandy in UOS? I'm happy it didn't of course, but I'm trying to justify my diagnosis and Igenex's findings.
[ 11-21-2010, 08:56 PM: Message edited by: seekhelp ]
Posted by FYRECRACKER (Member # 28568) on :
wow thats a lot of flagyl. were there positive changes that occurred after the first 6 days? or did you get a little worse?
Posted by BoxerMom (Member # 25251) on :
My cyst-busting symptoms are headaches and irritability.
I've done Flagyl at 1,000 mg/day for 30 days.
I don't have "big" herxes. Just changes in symptoms.
I hope this helps a little.
Posted by FYRECRACKER (Member # 28568) on :
i'm on low dose right now 2 x a week but i noticed headaches and irritability also.
Posted by blinkie (Member # 14470) on :
I could not tolerate 1500 mg a day long term. I eould get bloated and nauseaus at dinner and could not eat. Once i backed down to 1000mg a day I was fine.
I think Dr B says 14-30 days for cyst busting at 1000-1500mg a day.
Posted by seekhelp (Member # 15067) on :
Fyrecracker, I didn't really have any noticeable reactions days 1-6. On day 7, I got somewhat worse and on day 8. By worse, very stiff neck, some body pains, and stomach issues. On day 9, they disappeared. Really seems odd. The weirdest thing of all is my big toe on my left foot hurts so bad for no reason. lol. I can't remember injuring it. I can barely bend it.
I really can't determine any distinct patterns with treatment except for one thing TF has repeated over and over again. Every week, I will feel horrendous for 2 days or so. Very weak, yawning 24/7, air hunger, etc. Then it goes and life is more livable. I never have the energy I used to though, but I don't dread being alive on those other days. Posted by BoxerMom (Member # 25251) on :
Seek - that's a Babesia flare for 2 days each week. Are you treating for it?
Posted by 'Kete-tracker (Member # 17189) on :
my LLMD had me on 500mg 3X a day right off the bat. REAL tough (heavy) on my stomach so I split the doses to every 4 hrs. My doc didn't really want that but we figg'ered out a schedule.
I got thru 2 weeks worth that way :-(~ but when I told him I'd noticed no improvement he had me discontinue it & we just adjusted the abx doses I was on a bit. I'm wondering if I messed up & stopped some cyst busting before it really made some difference.
Anyone know of a "cyst-buster" as effective as Flagyl but not so tough on the tummy?
Posted by jackie81 (Member # 27031) on :
quote:Originally posted by blinkie: I could not tolerate 1500 mg a day long term. I eould get bloated and nauseaus at dinner and could not eat. Once i backed down to 1000mg a day I was fine.
I think Dr B says 14-30 days for cyst busting at 1000-1500mg a day.
I've taken 1000mg a day now for about 2 months. What do you mean Dr. B says take it for 14-30 days? Does he suggest going off it then or do you start up again?
Posted by nenet (Member # 13174) on :
Seek - please get yourself checked out for gout. Big toe pain is sort of the red flag symptom for this.
I'm not a doctor or health professional, but as I understand it, it's a build-up of uric acid, which for some reason kind of collects in your large toe area.
I wonder if it's possible that the Flagyl (or Herx reaction, or something else altogether, or all of the above) had an effect on your kidneys and messed with their ability to remove uric acid from your blood.
Just a thought, something relatively easy to check up on at least.
Posted by nenet (Member # 13174) on :
Ok, here is some info regarding my previous post. Seems this might actually be relevant:
"Metronidazole apparently interferes directly with the synthesis of DNA viruses, in a similar manner that occurs with cytosine arabinoside. Metronidazole also apparently interferes with protein synthesis, as uric acid levels increase during therapy, and may in some instances manifest itself in acute gout."
Posted by seekhelp (Member # 15067) on :
Thanks Nenet. I considered that. I also already have upper high normal limit Uric Acid readings (like it 8.0 is high end normal, I'm usually 7.8 to 8.3).
The toe pain has subsided. I've been done with Flagyl for almost 48 hours. I'm starting to regret it as my body is going nuts today.
TONS of muscle twitching everywhere, which I don't normally have. My eyebrows were twitching, quadriceps going crazy. VERY full head pressure feeling. I almost felt like my face was kind of numb this morning which scared the crap out of me, but it wasn't truly as I could feel it when I scratch it.
It feels like things are inside me jumping. How nuts. I've upped MagTab-SR dosing, but it's not helping a lot. My shins were hurting too, but that may be from standing on my feet watching a parade for 1+ hrs yesterday. I never do that.
I hope I didn't let a billion cysts turn into L-form or the other form on Flagyl alone. I had no choice with a suspected C-Diff diagnosis. Not sure what to do.
I have a consult my with LLMD in two days. Wish me luck.
Posted by BoxerMom (Member # 25251) on :
Good luck, Seek!
Posted by onbam (Member # 23758) on :
past 5 weeks i was on tini 1500 mg/day (taking a liver break.) I didn't have any dramatic reactions either, and I have WB-confirmed Lyme. Did improve some, though,.
Good luck--hope you get to feeling better.
Posted by karenl (Member # 17753) on :
Seek,
I was on 1,500 - I think a lot longer than 10 days and the cyst buster did nothing, I was feeling even a bit stronger every day.
You say: "It feels like things are inside me jumping."
This could be a sign of small parasites. Flagyl can kill small parasites or at least make them unhappy.
Have you been on parasite treatment?
Posted by Haley (Member # 22008) on :
I do not have a herx reaction with Flagyl. I just feel better on it. Oral Flagyl gives me bad GI issues. I am on IV Flagyl - it is soooo much better than the oral Flagyl.
Posted by peter j (Member # 11825) on :
![[Smile]](smile.gif)
At least my fear of cyst busters is a bit lower now. ![[Frown]](frown.gif)
Yeah, stiff neck, but my health cycles constantly day-to-day and for the first 6 days, nothing big happened.