I think I might be hypochondria-ing myself out. This is the only forum I have ever gotten solid help from. Sorry for the influx of newbie questions.
I started doxy + tinadamax (first abx ever for Lyme and I jumped right into 1.5g of tindamax a day) and haven't really herxd. Just had a headache a lot of the time, and only a few times did it get somewhat bad.
However, day 2 to 3 my right tricep started going a bit numb. Nothing outrageous but enough to notice. No tingling, no burning, no shooting pains. It has came in and out since then.
Day 6 (today) I woke up with my right calf feeling the same. I got a bit scared and havent taken my abx today as I'm seeing a primary care dr tomorrow and will call my LLMD as well.
Right calf went away as the day went on but my right tricep got worse, and that whole line of muscle/nerve line down to my pinky is all very slightly numb. motor ability is still 100% I can flex all muscles and do everything the same. No burning, shooting pains or nothing just feels 5-10% numb.
The annoying part is, I've had sypmtoms like this in the past so its hard to know. But I can't recall it ever lasting this long. I am chronically tight and I can cause numbness or shooting nerve pains when bending or moving my neck in weird movements but it usually goes away relatively fast.
When reading about neuropathy issues, it seemed to indicate it almost always starts at toes/fingers which was not the case for me at all. It also seemed to indicate that you'd have similar pains/symptoms on both sides of the body that should be close to equal, definitely not the case for me. Also I have only experienced numbness, no pain or burn.
I think I'm probably fine but being active is a huge huge part of my life, and I didn't want to risk having anything permanent happen.
Posted by Lymetoo (Member # 743) on :
Well, DO run it by your LLMD .. but this really sounds like it could be a herx. You're in the first week and things usually ramp up by Day 3 or 4. You are right on time. (ugh)
I THINK that as long as you are not having shooting pains or tingling in your hands and feet, then you are probably OK. But .. I'm not a DR!!
With Lyme, everything will get worse until you beat it down. It could take a long time.
I don't know how in the world you can tolerate tindamax at such a high dosage on your first week. (perhaps you are NOT handling it) That much would have killed me, I think! Posted by Keebler (Member # 12673) on :
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by stiffyoungman (Member # 40067) on :
Lymetoo, thanks again for a reply. this forum really is awesome. Like I told you via PMs, I am not a severe case of Lyme (if Lyme is what I have as my labwork is only semi convulsive.
Yea, after everyone saying Tindamax is a severe herx drug and my dr not recommending I start slow I was worried but I haven't really herxed much.
Like I told you in the PMs, I am on the better side of health than a lot of chronically ill Lyme patients. Which is maybe why he decided to just start me on 1.5g a day right away with my CD57 being on the high side.
Yea, sometimes I feel like I am forcing myself to feel slight tingling in my toes kinda like when you talk about bugs you feel them on you. Definitely not anything concrete. And no shooting pains to my toes or fingers at all.
If I was herxing with ANYTHING but physical nerve issues, I would be content and actually happy to see a herx. However being active and playing sports is just about the only hobbies I enjoy in life, and I will not risk anything.
Just out of curiosity, there has to be many patients who have issues on both Tindamax and Flagyl, what do those patients do? Just beat it down, wait for cyst to undo, and beat it down again? (As some argue is the best way anyways)
Posted by Lymetoo (Member # 743) on :
If you can't take either, then you will have to take natural things, like grapefruit seed extract or other herbals.
If you had the numbness prior to beginning treatment, then that IS your herx. Now it's back.
Posted by lax mom (Member # 38743) on :
My husband was on Tindamax briefly. His LLMD had him take Methyl Protect and B6 to prevent neuropathy while on it.
Posted by girl (Member # 18022) on :
B vitamins to protect your nerves! I took a liquid B.complex for fast absorption, but this was with Flagyl. It *really* helped.
Don't want to mess around with peripheral neuropathy -if it's a drug side effect, it can be permanent.
Posted by stiffyoungman (Member # 40067) on :
I took 100mg of B6 once the symptoms arose. I will take the B100 complex I have. I'm not sure what Methyl Protect is I'll have to check it out.
Girl, yes I know. This is why I was stating I will take no risk. According to the PDF he gives the indication that Flagyl/Tindamax are given to the chronically ill RESISTANT patient. My CD57 is high and I've never attempted to treat, I will never risk permanant neuropathy when I don't even have conclusive evidence I have Lyme. My labwork is basically god smack in the middle. My main argument is I know ive been bit by ticks in my life, and I've ruled out almost everything else. And 2 LLMDs including one on the ILADS board are confident enough in the possibility to treat me.
Posted by Lymetoo (Member # 743) on :
If you have lyme-specific bands, then you have lyme.
Posted by stiffyoungman (Member # 40067) on :
I only got an IND on one Lyme specific band.
Posted by stiffyoungman (Member # 40067) on :
LLMD said to have family physician take a look at me and report on what the Dr says. Staff didn't sayanything else when they called.
Been off abx for about 36 hours and my tricep down to my pinky is still slightly numb.
What natural agents are cyst busters besides GSE? I've also heard of Wobenzyme. Anything else?
Posted by Lymetoo (Member # 743) on :
Been checked for coinfections? And .. which lab came back with one band? Which band?
Posted by girl (Member # 18022) on :
GSE is a cyst buster? Yikes! LT - why didn't you tell me? LOL
Posted by stiffyoungman (Member # 40067) on :
GSE is known apparently. Wobenzyme Dr. K uses
Went to primary care and he doesn't know much about neuropathy issues but he didn't seem to think it was related and recommended I continue my abx.
I'm waiting for word back from at least one of my LLMDs before I do that.
He said my pulse was much stronger when hand was relaxed than behind the back of my head. In his opinion that indicated impingement, not damage.
Posted by Lymetoo (Member # 743) on :
girl .. if you hang with me, you learn!
We need to talk, btw... Posted by girl (Member # 18022) on :
I know! And here I was thinking about taking GSE for my candida. I don't want to be busting up any cysts, though! They'll do that in their own time. Posted by Lymetoo (Member # 743) on :
Might be a good thing! Keeps the bugs away!
Posted by lax mom (Member # 38743) on :
Since you are active and able to play sports, what prompted Lyme treatment?
I ask that because my son's LLMD doesn't treat unless the person is sick.
Believe me, Lyme treatment is harsh. If you are well enough to play sports, maybe you don't need heavy duty treatment? Just my thought.
[ 05-14-2013, 12:24 AM: Message edited by: lax mom ]
Posted by Jessiep (Member # 35399) on :
I took Tindy for 6 no everyday. 1g. I also thought i was getting neuropathy. My llmd said not its lyme sx. And he was right. I did have that stuff on and off and like you and was unable to figure out whether it was the Tindy it the lyme. I'm freaked out about taking all these meds so I assume Tindy. It went away like every other sx I've had.
Posted by poppy (Member # 5355) on :
I think flagyl is more likely to cause neuropathy than tindy. But it does give me a headache when I take it after being on abx a while. I interpret this as cyst busting activity. If the headache is too bad, I stop it for a while.
And lyme causes neuropathy, which a herx will worsen. So, it might be hard to figure out what is going on here.
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