I started taking Alinia about 2 weeks ago. After a few days I started to get burning in the lips and tongue that was an old Lyme symptom. Gradually the burinng went to my arms and legs, again an old Lyme symptom. It did not always occur but it would occur a couple of hours after a dose.
I called my LLMD and he took me off the drug. I thought Alinia was not suppose to have peripheral neuropathy as a side effect. Has anyone had an experience like this?
Thanks.
Judith
Posted by surg (Member # 6937) on :
Nope, it had no side-effects. I took it for 3 days for parasites. It was originally made for children.
Posted by minoucat (Member # 5175) on :
Nope, nothing like that in 5 weeks of use. I did not find any indications of neuropathy either, when I looked up the possible side effects.
My understanding is that it is used for both Bb (cyst) and babs (as an antiprotozoal), as well as parasites.
So I have to wonder if you were experiencing a herx. Or perhaps you're just unusually sensitive to it, lucky you.
Posted by Susan in G'ville (Member # 8185) on :
Dear Judith,
I found your post searching "burning tongue." I've had that problem since I started doing an IV Rocephin (4 days on) and Alinia (on the 3 days off).
For me it burns most on the sides of the tongue. Also the tongue is super sensative to my teeth -- it hurts when it touches tham. I find it feels best when I scrunch up my tongue so that it doesn't touch any teeth.
I'm doing well as far as yeast goes, so I dn't think that's it. My tongue has no coating. An ENT doc I saw said that it sounded like nerve inflamation. I seem to recall that Lyme can affect the (12th glossal?) nerve, which innervates the tongue. In another post someone mentioned the 5th cranial nerve.
Do you still have problems with this?
Best Wishes,
Susan
Posted by lymster (Member # 5964) on :
I did Alinia for 60 days and I didn't experience anything like what is described on the initial post of this thread; I did have a lot of herxing during the first 4 weeks INCLUDING severe leg pain and pins/needles throughout (sp) my whole body.
Chanaging the subject, is it possible to spell check what you write ON THIS SITE without sending it to a word procesor???? My spelling can be scary, to say the least, sometimes I wonder if it is "readable". Any suggestions for spelling will be appreciated.
Take care, Lymster in WA
Posted by groovy2 (Member # 6304) on :
Hi Judith
My LLMd put me on alinia to stir up germs before I did tests--
3 hours after taking first dose I was SS-(super sick) There was a lot of stuff dying- and almost me- It caused the strongest herx I had ever had to that point in time-
I did not take again for 2 weeks- because of holidays 4 july-- and I did not want lab techs reading my tests while talking about what they did over holidays-
When I took the rest of doses- 7- not much more happened--
After the herx was over from first dose I did have some improvement-
I have Lyme and Babs-- I think it was the babs it was stiring up--
I do think it was useful to me-- If I had more Alinia I would take it again--It helped my digestive system work better for about a month-
My lab tests came back mostly Indertiminate-Igenx--
I had a picture perfict bulleye bruse weeks before I started getting sick 20 yrs ago--
I have no doubt that I have lyme and babs and maybe some type of other parasite also--
Lymester-- I dont think there is a way to spell check here-- My spelling is horiable now and getting worse with every word I type-
If we had spell check here It sure would help make use look smarter-- Sometimes after I compose a post I can bearly read it--LOL ---Jay--
Posted by micul (Member # 6314) on :
Lymster.
An easy way to spell check is to write your post in your "Word" program on your computer, copy it to your clipboard when you are finished, and then paste it in your Lymenet post. This also works for emails.
Posted by lymster (Member # 5964) on :
Thanks micul for the sugestion of word, I was looking for quick and easy, not copy-paste-bla-bla-bla.....; if it gets worse I will have to do that......yikes!
Groovy, well I guess we are on the same club, "the spelling idiots".
Lymster in WA
Posted by WildCondor (Member # 434) on :
Alinia is said to be a new c.difficile drug. I took it for a wek and it did nothing at all.
![[Razz]](tongue.gif)