'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Michael- Alinia, huh? Yes, it Must be "kind of a new thing". Never heard of it, & I'd discussed latest treatments w/ my LLND a couple months ago.
FIGURES the West Coast is into it sooner. Mind explaining what it is? An Rx? What is it Made from?
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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It's an anti-parasitic drug. Directed at Babesia, some doctors believe it's also a cyst-buster. It seems to be gaining some traction as something doctors are trying more and more.
I'm early in on it. It's been rough, but who knows, it might not be the medication, it might just be the illnesses. I never know.
As far as what it's made from, I'm not sure. From the price, if I had to guess, it's made from gold, titanium and diamond dust.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
Day #4 Alinia. Extreme fatigue and GI issues. Also on mepron, biaxin, bicillin. Debating on whether to stop this as I cannot keep my eyes open and am walking zombie!
Anyone know if this fatigue is a sign of babs herx, or a drug side effect? Also, I only have a two week supply. Does it make sense to take it for only two weeks?
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Mandy,
My first four or five days were the toughest in terms of really bad GI pain, mild nausea, headache, loss of appetite etc. Then I kind of acclimated to it (I'm on Biaxin too which is tough on me too).
I went off everything for a couple of days because I couldn't tell if I was having an allergic reaction or herx - rash, trouble breathing, red ear, etc., but I'm back on at half a dose, ramping up, keeping Benadryl nearby- talked to both my internist and LLMD, who don't think it was an allergic reaction, but I'm very sensitive.
Mandy, let us know if you start feeling better as you acclimate or what. I'm feeling profoundly fatigued again today so like you, I don't know if it's herx or medication.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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The non generic version is Romark Pharmaceuticals called nitazoxanide. I have 500mg tabs. I find it odd they only manufacturer this drug and no other ones.
I started at 1,000mg a day. So started all at once.
Posts: 348 | From maryland | Registered: Jul 2008
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Jill E.
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posted
I ramped up but was able to ramp up quickly. I always start low on any drug, herb, homeopathy, etc. because I'm sensitive. But Alinia was pretty easy for me to get to the dose, although it has been hard on my GI tract.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Myco, so you order from canada... and spend $700 for a month supply? Does one need a prescription?
Posts: 758 | From now TX | Registered: Mar 2001
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posted
I was initially supposed to take 1/2 500 mg, 3x a day.
The first week, I did that, no real problems.
After the second week, though, it seemed like it got harder to tolerate. I'd 'herx' or whatever pretty fast. My legs hurt real bad, within 2 hours, and felt rotten otherwise too. More than rotten, honestly.
I never know, though. Is it the med or the illness?
I'm taking the 1/2 500 mg 2x a day now. I've skipped it a few days when I felt really bad.
Since I started it, the night sweats are way down, and the heart pounding has been less. The night sweats come back immediately if I skip a day. And....my heart's been pounding some more this week, which is upsetting/discouraging.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
Same here, heart pounding non existent anymore. Never had sweats, at least night sweats.
It is hurting my stomach the most like Jill, but am feeling as if maybe it is starting to clear my brain a bit when I'm not so exhausted from taking it.
How long is everyone supposed to be taking this drug? I have a 15 day supply.
Posts: 348 | From maryland | Registered: Jul 2008
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posted
I am a new poster to this forum but have been watching it for a year or more.
I figured i would hop into this discussion. I just started taking Alinia(500mg 2x) about a week ago.
I have tolerated it better than most of the antibiotics i have taken(mino,zith,doxy) I was taking them for lyme/mystery bug.
It turns out after taking this that i also have(had hopefully) stomach parasites.
Posts: 9 | From PA USA | Registered: May 2009
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Carol in PA
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posted
Mojoe,
Welcome to LymeNet!
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Oh, my, gosh, the herxing just began. I had been tolerating Alinia reasonably well except GI issues.
But now I've got that horrible rocking boat sensation like I did on Rifampin, had a horrible night of twitching, myoclonus, etc.
Does anyone know if Babesia has a flare cycle? I know Lyme is supposed to flare every 28-days but I've never been one to wax and wane.
I'm trying to figure out if this is a cyst-busting or Babesia reaction.
Wouldn't you know this hit just when I finally got some work to try to pay off a fraction of my medical bills. I had to scale back to half a dose this morning so I could function at least a little.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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I'm no expert but sounds like lyme cyst busting to me... babs doesn't usually cause twitching, myoclonus isn't that usually bart or lyme?
I hope you are feeling better. My gut is even worse since I just added artemisinin in.
For babs I'm taking alinia, bactrim, art, mepron. Trying to hit it hard without killing myself!
Posts: 348 | From maryland | Registered: Jul 2008
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posted
I wonder what makes it rough for me. Some days, not so bad....other times, just an hour or so after I take it....I feel real bad. Herx-like, though, I still don't understand 'herxing' from a blood parasite (babesia). Not supposed to happen, according to the premise....but SOMETHING is going on.
It's not TOO bad on my stomach, compared to some abx....
Hang in there Jill (and everyone else)
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Thanks, Mandy and Michael.
I'm about to take my nighttime dose and will hope for the best.
Yes, I guess maybe it's busting cysts for me because I've always associated my terrible myoclonus with Bartonella, which I'm still positive for after years of treatment. But this is definitely stirring things up! I'm also on Biaxin so maybe that is stirring up Bart a little.
One of my LLMDs thinks that any of these diseases can cause a herx reaction, not just Lyme. I'm just starting Babs treatment, but I can vouch for the fact that I herxed like crazy on Bartonella treatment. So maybe, Michael, there is a Babesia herx as part of this.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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MariaA
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Member # 9128
posted
all babesia meds seem to cause temporary worsening of symptoms. I know, it's not supposed to be a 'herx' . But it still seems to happen.
-------------------- Symptom Free!!! Thank you all!!!!
I'm making a joke, but....your probably know what I mean.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Jill E.
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posted
My herx went away pretty quickly. I think my backing down the dose for a day helped.
One doctor told me the other day that Alinia is anti-viral as well as being a very broad spectrum anti-microbial. That would be nice if it hit some viruses as well as the parasites/Babs. Anyone else hear this?
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
you all seem like you've been rx'd it for long periods of time....
i've been having GI probs but my LLMD just gave me (a week ago) 3 days rx of alinia at 2x/day. would this really do anything? i didn't ask but perhaps he was just seeing if i could tolerate it?
either way i ended up in the ER last saturday night with stomach/right lower ab pain.
Posts: 148 | From Berkshire County, MA | Registered: Apr 2008
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Jill E.
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Member # 9121
posted
St. John,
I don't know how long I'm supposed to be on it. Two of my Lyme friends got horrendous GI problems on it - very bad diarrhea to the point of not being able to leave the house.
I don't know if that means it's working as an anti-parasitic or if it means it's just not being tolerated, but it obviously hits the GI tract (I guess that's where a lot of parasites are). But ending up in the ER isn't a good thing!
One of my friends toughed it out but refuses to go on it again, one went off it and considers it intolerable.
I do know the GI pain I had the first several days had me wondering whether I'd be able to get through this, although in my case, it eventually calmed down. But I did try a few things like reflux medication, mastic gum, etc.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Jill E., my lyme doc says that babs has a 1-week cycle and a 2-week cycle.
He told me this when I went on babs treatment and reported to him that I was now getting sick every Friday evening and it lasted until Sunday evening--48 hours of just laying there not eating, not drinking, not talking, not getting up to go to the bathroom, in total despair thinking I would always feel like this. Then, on Sunday evening it would lift and I would go back to normal. Every weekend like this.
As we treated the babs, the sickness got less and less and finally went to once every 2 weeks. Then, finally, it went away.
So, I believe my doc was right.
It has been 4 years now since I finished lyme treatment and I am symptom-free, enjoying my life--the same life I had before lyme disease.
I had lyme, babs, and bart. Had these diseases at least 10 years before being diagnosed.
Never give up. I got well seeing a Burrascano type doc. The doc is the key in my experience.
I and all my friends and acquiantances got well by going to docs who follow the Burrascano protocol.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
TF,
Thanks for the info. In my short time on Alinia, I'm getting a sense it might be a one-week cycle for me so far.
You are an inspiration. I have Lyme, Babs Duncani, Bart, Ehrlichia and Anaplasma, and have been in treatment five years. I have excellent ILADS doctors - it's just that I've had a lot of setbacks due to antibiotic damage and my being so sensitive to treatment.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
oh..sorry if i wasnt clear... i've had abdominal pain for several weeks...it was those symptoms that had me go to the ER...not GI problems from the Alinia. i'm waiting for test results for c. difficile now. hm. I'm not really digesting food or absorbing food. i feel i eat like a horse and i'm only maintaining my weight (underweight), not gaining it... i see my LLMD next week and plan to ask about the Alinia and why he gave me a 3 day rx for it...
Posts: 148 | From Berkshire County, MA | Registered: Apr 2008
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posted
I think a 3 day RX is generally for the gut parasite that Alinia is indicated for. That is Cryptosporidium and Giardia.
I think it also is indicated for other parasites...so maybe your LLMD isn't necessarily directing its use at babesia or lyme.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
After being really gone for a while, I've had some really drenching nightsweats the past week. That was the one thing that the alinia/art combo seemed to tamp down.
I'm not considering that it's 'returned' or gone away either.....just noting it.
Other sx, day to day....not changed so much. Feel pretty awful a lot of the time, with odd intermittent 'okay' times.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Michael,
I'm sorry to hear the nightsweats are back. I never had nightsweats as a symptom, but then again, I still haven't been on Art, Malarone or Mepron, so I haven't really forced them out either.
I am having far more gasping for air. I don't know if it's the Alinia or not, because it was a symptom that just started in the last few months and seems to be getting worse, but maybe it would have gotten worse anyway, given that the Babs symptoms are finally showing up.
Like you, some days I feel OK on Alinia, like it's not doing much, other days I feel lousy. But I'm combining the Alinia with Biaxin and I still have positive Bartonella, so it could be the Biaxin hitting the Bart.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Jill E.
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Member # 9121
posted
Oh, crud, I have yellow eyes.
I'm going for a liver enzyme test tomorrow. I had them tested two weeks ago and they were OK. I was in liver failure in 2005 from Ketek.
The Alinia package insert lists eye discoloration as an adverse reaction.
I called my LLMD today and is aware of the situation, and we will await my liver enzyme tests. I pray it's an Alinia side effect, as unflattering as it looks!!!! But better than having liver problems.
I'll post my results tomorrow.
EDITED NEXT DAY: My liver enzyme results are normal, thank goodness. I will fax them to my LLMD. Maybe I'm one of those who unfortunately gets the Alinia yellow-eye adverse reaction. It's no fun looking this way.
Jill
[ 05-13-2009, 03:11 PM: Message edited by: Jill E. ]
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
OK, I got my cheap Alinia from India via a Canadian pharmacy. It's the same stuff I had before, or at least looks exactly like it- a generic called Nizonide. I think I spent $140/month for what is my very high dose of 1000 mg twice a day (I actually get breaks so it's not 30 days at this dose).
Many people are on a dose half of mine, so you might be able to get your needs met for half of what I paid.
I took the first pill and immediately had yellow pee, which stopped happening the next time or two. Earlier I'd had concerns about whether my first box of Indian Nizonide was legit or not, and now I think I just get over the 'yellow urine' side effect quickly (I'm on a lot of other herbs and drugs). So who knows, I'm not worried about it not being the real thing anymore. I went through PHarmacychecker.com and they're supposedly the most reputable site for filtering the overseas pharmacies that sell to US patients.
It probably took 2 weeks to get here, I wasn't home so I don't know for sure. They had my LLMD fax them a prescription and were supposed to have me fax a copy of my drivers' licence, though they didn't end up requiring that. It took a couple of phone calls to get all of that set up.
-------------------- Symptom Free!!! Thank you all!!!!
C diff is anaerobic like lyme and metronidazole is one of the few drugs that work on C diff. So there could also be the same connection with alinia and metronidazole working on lyme cysts. I too wonder if alinia works on cystic lyme because I take alinia and notice nothing from it other than the radioactive yellow pee.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
The dosage my doctor gave me for Alinia is only 100 mg twice a day. After four weeks, he added 150 mg Rifampin and told me to expect some Herxing.
Nothing has changed. Sort of frustrated.
It sounds like most here are taking s stronger dose of the Alinia?
Is anyone using Alinia & Rifampin?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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posted
bumping for updates
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Michael,
Are you still on Alinia? Because you said your night sweats have come back. Just wondering if that means that the Alinia isn't doing as much now? (like maybe it only works for a certain time than stops working?)
I will be starting this med next week.
Already am on Malarone and Zithromax, and Artemisia, but I know my babs is still there because when I stop my Artemisia, I get night sweats.
We'll see what happens. I can come back and update once something happens (or doesn't happen) with it.
I hope it won't make me too tired, because that is my worst symptom already.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I am still on it. It's been over a month since I've had nightsweats.
I have no idea what connects what. i HOPE that the much-lessened night sweats is a good sign, but I still am feeling pretty terrible in other ways....
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Hoosiers51
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Michael,
Oh, okay. So sorry you're still feeling terrible. What other anti-babs stuff are you on?
Mepron and possibly Malarone can make some people feel terrible (like a dragging fatigue) who have CoQ10 issues. What symptoms are making you feel so bad?
For me it is the fatigue, like I said. I'm not sure if it's babesia, lyme, or bart for me, or something else. Sometimes I wonder if the babesia is not what is causing my fatigue. Guess I won't figure out what is causing my fatigue until something actually helps it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Main symptoms, dizziness, un-real feeling....like I might pass out. Very unsteady. Muscle pain, mainly in legs, sometimes full body burning maliase. Weakness, shakiness at times. Also, being exhausted.
I didn't used to get headaches , but I get doozies now. Also, my knee has been hurting/swelling up at times.
I get some weird symptoms that come and go, pains (that get pretty bad) or other odd feelings....and then they just go away.
I've thought perhaps the babesia is getting beaten back a bit and maybe lyme symptoms are becoming more prevalent, but who knows...
thanks for writing. And sorry you're feeling rough too.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Hoosiers51
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Member # 15759
posted
Only been on my higher dose for 2 days now. I had night sweats the other night, which could be a flare up from Alinia, or could be from stopping my artemisinin a week or so ago.
It is too early to tell much. I have been feeling "hot" and kind of flu-like at night. Maybe the Alinia is "doing something..." but I'm also newly on anti-lyme/bart herbs, so it would be hard to know what's what.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I'm still on it. Take 2 500 mg pills a day. I haven't had night sweats in over a month, and my heart is calmer. Not great, but better.
I still feel like hell in other ways, but also just starting Minocycline. Also using Art, Enula and another anti-microbial.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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MariaA
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Member # 9128
posted
I'd say that adding Alinia to my existing babesia treatment this spring and early summer, pretty much mopped up my remaining hard-to-treat babesia symptoms. Can I get a Hallelujah, please????
I was on maybe 3 courses of alinia for 3 weeks each, at varying doses, along with Biaxin/Mepron and artemesinin and cryptolepsis at various times (I ran out of various meds at different times while I was on Alinia). I'd been on 5 months or so of Mepron and Biaxin before then.
My symptoms for babesia were 'relatively' minor compared to other people's- I'd had anorexia and appetite loss, night sweats only about every other day, headaches that weren't as bad as some people describe, 2-3 migranes a month, and really bad air hunger that was my worst symptom. Mepron/Biaxin followed by Mepron/Biaxin/Artemesinin and later cryptolepsis instead of artemesinin all got rid of all those problems other than air hunger. The air hunger was excruciating and nothing seemed to get rid of it, it didn't correspond to any other symtpoms like pain or fatigue. I'd say that using Alinia probably was what finally got rid of that symptom.
I was also using Chinese herbs at that point that were formulated for me by a very experienced master herbalist from China, and probably stayed on the herbs for 3 months, so it's possible that this was also the reason rather than adding Alinia.
I'm still really sick, but not with recognizable babesia symptoms- mostly fatigue, some new joint pain that came up with a herx, neck pain, foot sole pain, etc- and responding to Flagyl and having very distinct herxes whenever I change antibiotics. I'm not totally sure what I'm targeting anymore but don't think it's specifically classic babesia symptoms
My LLMD suspects bartonella (I'd tested negative previously but have been reinfected with something since that time) so we're going to go that route next and I'm planning on re-evaluating Alinia and cryptolepsis and babesia treatment later. I'm actually considering continuing cryptolepsis for the next few months regardless of being free of babesia symptoms.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
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Member # 9128
posted
I just started looking up drug interactions with alinia on http://www.drugs.com/drug_interactions.php, and found something interesting that was not in my pharmacy prescribing warnings: it works much, much, much better if taken with food. It sounds like Mepron in this regard.
quote from the drugs.com interactions page: DJUST DOSING INTERVAL: Food enhances the bioavailability of the pharmacologically active metabolite tizoxanide (desacetyl-nitazoxamide) from nitazoxanide administration. According to the product labeling, administration of nitazoxanide tablets with food increases the area under the plasma concentration-time curve (AUC) of tizoxanide and tizoxanide glucuronide in plasma by almost 2-fold and the peak plasma concentration (Cmax) by almost 50%. Administration of nitazoxanide oral suspension with food increases the AUC of tizoxanide and tizoxandie glucuronide by about 45% to 50% and the Cmax by less than 10%.
MANAGEMENT: Nitazoxanide tablets and oral suspension were administered with food in clinical trials and are recommended to be administered with food to ensure maximal drug levels in plasma.
-------------------- Symptom Free!!! Thank you all!!!!
Hoosiers51
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Member # 15759
posted
Uh-oh....
I'm having jaundice, or maybe it's a side effect of the Alinia. I can't get a hold of my LLMD right now, during the weekend. They don't have an emergency line that I know of.
My skin is yellow, and the whites of my eyes are a pale yellow. This is a side effect of both Alinia AND Malarone, so I don't know which is causing it.
Any thoughts?
I didn't take either one last night after we discovered the eyes were going yellow....but I don't know if I should take my morning doses today.
Does anyone know if it's really bad to skip a few Alinia doses or Malarone doses? Like, does it have a really short half life and resistance is an issue with this? (I always worry about my babs becoming resistant to stuff)
Since this could be jaundice from Malarone, I'm thinking this could be dangerous, so I don't think I can risk taking either of these drugs until I hear from my doc.
What should I do? Any ideas?
Posts: 4590 | From Midwest | Registered: Jun 2008
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MariaA
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Member # 9128
posted
I also worried about resistance but I had to skip Mepron a few times for days at a time, and I still managed to get better from my babesia symptoms in the end. I thought yellowing eyes was an Alinia side effect and not necessarily jaundice?
See if your LLMD can give you a 'standing order' for liver enzymes tests at a lab like Labcorp so that you can just walk in and get tested regularly (unless it doesn't work out with your insurance or ability to pay for it or whatever).
for routine tests it may be easier than doing it only at the LLMD's offie.
I somewhat agree on the ER, but do more research, I haven't had to deal with this personally.
-------------------- Symptom Free!!! Thank you all!!!!
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