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
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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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Member # 15759
posted
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
Frequent Contributor (1K+ posts)
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
Frequent Contributor (1K+ posts)
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
Frequent Contributor (1K+ posts)
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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