trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I am just starting Flaygl, last time might have been 10 years ago, I am taking it alone to start.
I have been on Tini and Plaquenil before and had miserable times on both. Peripheral neuropathy, major inflammation, joint pain and feeling like my whole body is full of acid.
Is there anything that takes this down? I'm only a few days on the Flagyl and it's coming on fast and furious. I am on a small dose. Is there any chance this will abate? Anything I can do?
(I'll push through if need be but with the other 2 the neuropathy from it never completely went away. It took a long time for it to improve at all.)
Or should I just call the doc tomorrow? I really hate to create more permanent damage.
Is this typical or is it mostly me?
Thanks
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Could you please explain what it is when you stated that you came down with it.
I took Tinidamx and I don't know if it did permament damage to my neck and shoulders and tingling down my arm to my fingers. It feels as if I lifted something heavy and pulled a disc in my neck. I am currently wearing a neck brace to relieve the pain on the nerves.
I am scared to take it again.
You stated it helped with brain fog but are you scared to take it.
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I'm not sure if what I'm describing fits the definition exactly. I'm talking about nerve pain, tingling, numbness... mine is kind of all over.
I do know one thing, though. When I started Lyme treatemtn the neurologist that diagnosed me said the tingling, numbness and pain going down my left leg would never go away. She told me the myelin sheath was damaged. She was wrong, it did! Ha!
What I'm trying to figure out is if there'something I can do to minimize this or if, perhaps, it might resolve when I add the other ABX and Babs meds.
If not maybe better detox?
It could be I'm just a walking cyst form factory and this is what it takes to deal with them.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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WildCondor
Unregistered
posted
Dahling!
If you are experiencing peripheral neuropathy with flagyl or tinidazole, you should call the doctor, let them know and you will probably have to stop taking it. I would guess you will not be able to take it because it has happened to you before. What is the dose, per day?
Maybe you can do herbal cyst busters?
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trueblue
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Member # 7348
posted
Hmmm... Drat! It's never happened with Flagyl before but I haven't taken it in around 10 years. I'm only taking 125 mgs so far. I was supposed to start on 250 but figured I'd test the waters. I was gonna raise it tomorrow.
This will throw a wrench into the works. I thought I had a new plan.
What would an herbal cyst-buster be? I'm not even sure this was meant to be busting cysts. (I was supposed to add Babs meds to it next month.) Unfortunately, this doc is not going to opt for herbals.
Tini was very bad, I was on a massive dose for 2 months when it first came out and then said no more.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Callyour Dr first and get his input... and
DETOX DETOX DETOX!!
Wear those patches on your head if need be
Milk thistle, milk thistle, milk thistle
Water, water and more water.
Sauna if you can find one.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by lymeinhell: Wear those patches on your head if need be
ok, gotcha!
I've been drinking pretty good but my face started burning since I posted this and broke out in a rash,. Feels like someone rubbed a cat on my face.
ok, rash is clearing, drinking, patched, took milk thistle...
smokey
(I'll call tomorrow, in between parts of the stress test. I can't believe the level of fun we get to have sometimes.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
sorry you have to go threw this true
very good idea to cal your doc first thing....
could you ask him/her to start on a lower does & work up?. I have heard some people taking a sliver & working up from there. If your cyst count is high you may not be able to tolerate even a 1/2 or a 1/4 dose.
A natural cyst buster has been talked about lately is GSE.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thanks, Dana, and Happy Birthday again!
I started with 1/4 dose. I'll call them. I don;t think I've been given a cyst buster for 6 or 7 years. I think this was intended as run up to Babs treatment. I'm not sure we thought out the possibility of being extremely cysty or totally protozoa infested, whatever...pfffft. I just want soemthing I can tolerate so I can work my way up to real treatment.
I did take GSE for a few months but couldn't tell if it did anything at all. So stopped when I stopped everythign for a while.
you might be right maybe 1/8 is a better dose. It just seems so absurd. I'm not getting any other Flagyl side effects, no metal mouth or gastro stuff at all. Go figure.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Sorry True
I can't get the link to drug digest on tindamax
but if you click on the link & type in tindamax in the search box there is some mention of numbness & tingling in the hands & feet, but not in the whole body. Could be a drug reaction or lyme herx? Don't know.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thanks Dana! I did google Flagyl a few times today and PN was listed as one of the side effects to call your doctor about. I'll do that and see what they suggest. Cut dose, pulse, whatever...
I spoke to a friend that told me this happens on Flagyl but didn't linger very long after stopping like it did with Tini. That makes it less scary.
It could be a herx but such a tiny dose, hmmm... the problems I had in Tini were at 2000 mgs/day. That wasn't fun at all. I wouldn't opt for 2 months of that again. yikes!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
sorry True
Got my drugs mixed up...I meant to say type in flagl. I am space case today
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Ha, Join the club!
I did know what you meant though. And thanks!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Hmmm, could you pulse it, like 1/8 dose once per week.
Heh, like I know anything about this.
What I do remember is that several years ago, someone who got peripheral neuropathy from medication, kept on taking the med anyway. And then the neuropathy wouldn't go away.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Heh that could ahve been me.
I'm going to investigate the pulsing option. Thanks Carol!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I called... my answer was keep going. Taking a few days off and examining my options.
Thanks for the responses, guys.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Hi True, Sorry you are going throught this.
Permanent neuropathy does not sound good. When I was on Artemesinin 800 mg twice I day I developed a stocking an glove neuropathy in my feet & legs as well as my hands & forearms. It did go away completely. I was frightened at that the time that I had created a new symptom.
Taking a few days off seems wise.
Oh- I don't know of any herbal cyst busters. Some think perhaps aretmesinin is one. Just a thought. On another forum someone suggested taking salt/Vitamin C while on anti lyme herbs to fight cyst formation.
Truly, I had nothing meaningful to add. Just wanted to stop by, see how how you are doing and say hi
Posts: 628 | From the south | Registered: Dec 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Ser, Thanks for telling me the neuropathy went all the way away.
It has before but comes around now and again. I was kind of surprised that it happened. First my joints went wild and all popping more than usual, then muscle and foot pain, like bruising, then the burning, swelling, numbness, tingling thing. It could also have been from stopping the other meds abruptly and switching. Perhaps ABX are anti-inflammatory after all. I never felt that effect but maybe I had nothing to compare it to.
This type of thing is way strange and I'd just as soon forget it happens. I skipped today and just drank tea and did whatever I could think of to take it down. It's better just my hands and feet feel swollen.
I think Artemisinin might be a cyst buster, as well. It sure does stir some stuff up, that's for sure. I don't know it just makes some sort of weird sense to me.
Anyway, I backed off and will regroup. Thanks
Actually, I have been doing way more strenuous chores the past few days and that probably isn't helping matters.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I'm glad you are in a better place now. Not only did the neuropathy go all the way away, the long term tingling in my fingers is gone (that was neuropathy too but I never labeled it.) Just noticed this the other days. So many symptoms and so little time to record them. Hard to know when to push through and when to take a break.
For inflammation Noni and Tumeric (plain old cooking herb from the grocery stores) come to mind. Along with Omega-3s.
For swelling have you tried heat/ice packs?
Feel better my friend Posts: 628 | From the south | Registered: Dec 2005
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