It seems like a number of us (particularly on the West Coast) are starting up on Alinia. I've been on it for about 5 weeks myself.
I was thinking that maybe we could post our experiences with it, especially because it's kind of a new thing for many.
-Michael
Posted by lymie tony z (Member # 5130) on :
I've tried it as well for a few months.
I doubt it is the end all "cure" for TBD's.
My "LLMD in TRAINING" thinks it is all that's needed.
He told me, "he and a couple of his colleages, have had phenominal successes using this drug on their lyme patients".
However, of course, he is not forthcomming, in, patients names, histories, etc...
So, I tried it and from personal experiences, it isn't quite what he and his colleagues suggest.
Namely a cure-all!
Not, for me, at the least.
Perhaps, we'll find out what, if anything, this particular drug helps,
in the vast array of TBD's. But from my standpoint, whatever it is that I have,
(strain or strains of Bb or Babs or Bart or Ehrlichiosis or whatever)for that matter.
I did'nt find it's use either helpful or harmful.
In other words,
I did'nt get any appreciable reaction when I took this medication.
Don't let my experience stop anyone from trying this medication!
Who knows, it may have worked on, South Eastern TBD's, and not,
(wherever I contracted it-N.E. Ohio or N. Western Pennsylvania)
particularly efficatious against, North Eastern/Mid Western strains of TBD's.
Unfortunately, West Coastal strains may be even more mutated,
or mix and matched, due to their travels accross our nation.
We'll never know what or why or who, until we are alloted,
"Mucho-"buck-o's",
for research!
Which of course hindges on the new guidelines
and or the bills we have in the legislative system of snail paced action!
zman
Posted by tickssuck (Member # 15388) on :
Hi,
"I didn't get any appreciable reaction when I took this medication." My experience also as well as above poster.
Mind you, I was only on it for about 7 weeks, but I guess long enough that my LLND thought it wasn't helping so took me off of it, as I saw no change. Just my experience.
Sure hope it's helpful for you and others. I think I have one of the "mutated/mixed/matched" infections as the poster above mentioned. I definitely contracted Lyme and company on the West Coast, WA State to be specific. Good luck Michael. TS
Posted by m0joey (Member # 13494) on :
Will test for this at my doc's office today. I've treated bart, lyme, and babs, and the load of all three has gone down appreciably, so it will be interesting if this tests for me.
Posted by Myco (Member # 9536) on :
I am about to start taking it after I receive it in the mail. Adding it to my daily Zithromax and BLT, Enula and Artemisia.
What combos are you all on?
Posted by Jill E. (Member # 9121) on :
I am supposed to start it with Biaxin. However I developed tinnitus on Zithromax, so that puts me at risk for hearing problems with Biaxin. Seeing my LLMD soon. I may just go ahead and try the Biaxin and Alinia to see what I can tolerate.
It will be my first combo for Babesia Duncani. I'm very sensitive to medications (and had liver damage from Ketek) so we are easing me into Babs treatment rather than pounding me with Mepron yet.
Two of my Lyme friends developed very bad GI problems (as in the D-word, living in the bathroom) while on Alinia so that does worry me.
In the meantime, I'm ramping up on Crypto-Plus, then will add Enula and Mora, then Noni and BLT. Artemisinin may be too hard on the liver for me.
Jill
Posted by Myco (Member # 9536) on :
Either the Enula or BLT is doing something to me. I feel a little funky after taking them. Started Artemisia 400mg 3x daily about 4 days ago and feel slightly sharper cognitively, but nothing other than that. I was not aware that Art was hard on the liver.
Posted by Jill E. (Member # 9121) on :
Myco,
I was told by the naturopath that BLT is potent - that's why they are holding off for now on it for me because I am so sensitive. Maybe that's what you are feeling.
Yes, Artemisia/Artemisinin is hard on the liver -need to have liver enzymes monitored.
Jill
Posted by yanivnaced (Member # 13212) on :
quote:Originally posted by Jill E.: I was told by the naturopath that BLT is potent - that's why they are holding off for now on it for me because I am so sensitive. Maybe that's what you are feeling.
What's BLT
Posted by Michael_Venice (Member # 17254) on :
Okay, so I thought I'd add my experience at 5 weeks.
I was told to take 1/2 a pill 3x a day. This proved to be too much. By the 5th day, I was feeling really bad. I backed off a bit.
Most of the time, when I take a dose, my legs hurt pretty bad about an hour and a half later. Leg pain has been an issue all along, but it seems to exacerbate it. I react or possibly 'herx' fairly quickly.
When I tried to work up to full doses, I got damn sick. Very weak, shaky, etc. That 'bottoming-out" that I've described in other posts. I was VERY sick 2 days. Went to the ER one night. I've backed off the dose since.
I have had more muscle twitching since I started it. I've had a few really nasty headaches, which I really didn't have as a symptom.
On the plus side--and it's early, and I'm superstitious about saying much because it changes or regresses so much--anyway.
Significantly less night sweats. I used to wake up drenched nearly every night. It is less now, in frequency and how much. When I do fall asleep, which is still sometimes a struggle, I tend to sleep more soundly.
My heart palps have been less. it used to pound sometimes for hours and hours. Not necessarily fast, but pounding.
My appetite is better. It does hurt my stomach some, but when I took Ceftin and even Rocephin, I could not eat. Or couldn't keep food down. Take your pick.
I'm still struggling a lot with dizziness, feeling like I'm gonna pass out, tremors and weakness.
I'm also using CAT cream, which has teasel, cryptolepsis and artemisin. According to my doctor, it's a pretty strong formula.
I also take lots of supplements for support and detox.
I am not on abx right now. Trying to hit the babs and detox.
So..that's where I'm at.
BTW, I also have seen somewhat unsubstantiated things online about some doctors seeing a lot of progress in lyme patients with this stuff. I wish I knew more. Allegedly, it's a lyme cyst-buster as well.
Posted by m0joey (Member # 13494) on :
Update: Energetically tested very poorly for this.
Posted by Jill E. (Member # 9121) on :
Michael,
I will have to go slowly given that I can't tolerate anywhere close to regular doses of most medications, this sounds brutal, and it's my first Babs drug and first Lyme cyst-buster. I have a feeling my dizziness and muscle twitching could really get bad like it did on Rifampin (even though that's for Bart). Thanks for the warning.
Are you combining it with Biaxin? That's what I'm supposed to do.
Jill
Posted by Michael_Venice (Member # 17254) on :
No Biaxin yet, Jill. We'll see.
I never took many meds in my life before this, but I did SOMETIMES. (abx, other stuff when necessary)*
*(including, unfortunately, prednisone for months as I had my first lyme symptoms).
Anyway, I never thought I'd be scared of antibiotics. I am now, though. I understand your trepidation, especially considering your past experiences.
Posted by Myco (Member # 9536) on :
I am taking alinia with Zithromax. Haven't received it yet though.
Right now am just on BLT, Enula, daily Zithromax and Zhang Artemesia, all at full dosage. Some minor nausea and bowel seems to be moving slowly with very soft bowel movements.
Posted by chootik (Member # 11221) on :
I tool Alinia as well for about 2 months and didn't notice too much on it.
I did however end up loosing 15 or 20 pounds on it and the Doc wasn't sure why that happened. He said he has seen it in other patients as well.
I'm trying to gain the weight back but am on Yeast Diet so it's not very easy.
Just wanted you guys to know to watch out for weight loss.
Chootik
Posted by Vermont_Lymie (Member # 9780) on :
quote:Originally posted by yanivnaced:
quote:Originally posted by Jill E.: I was told by the naturopath that BLT is potent - that's why they are holding off for now on it for me because I am so sensitive. Maybe that's what you are feeling.
What's BLT
My best guess is Bacon Lettuce Tomato. Posted by Jill E. (Member # 9121) on :
BLT is a proprietary herbal formula in his line of Clinical Response Formulas (brand name of his herbal formulas) from the naturopath I sometimes see, who also works part-time with my main LLMD. I don't have the bottle yet, was told what the ingredients were at one time - can't remember, but I think some of the Buhner herbs or similar. If it were bacon, lettuce and tomato, I wouldn't get my usual spacey, tired herx!
Oh wait, I found a previous threat about BLT and here is what Viva posted:
Clinical Response Formulas
Ingredients: red root, teasel, boneset, black walnut hulls, lomatium dissectum, smilax, stillengia sylvatica.
It is formulated by a naturopath, and is supposed to target both bart and lyme.
There is a website (clinicalresponseformulas.com), but the product must be ordered by phone.
Thanks to Viva for posting the ingredients.
Jill
Posted by chris_s (Member # 19888) on :
quote:Originally posted by Michael_Venice:
Significantly less night sweats. I used to wake up drenched nearly every night. It is less now, in frequency and how much. When I do fall asleep, which is still sometimes a struggle, I tend to sleep more soundly.
I have been on Alinia at the full dose for two months and my night sweats are GONE - I had a hard time telling anyone because I didn't want to jinx it.. lol. But they have been completely gone for approx. 3 weeks now. In my case this constitutes a minor miracle. Also my dreams have been alot less 'vivid' - which is awesome.
Yes they have been hard on the GI tract, and thank goodness for insurance cause they are bleeping expensive!
Posted by Jill E. (Member # 9121) on :
Chris,
This is encouraging news! Way to go!
Are you taking it alone or is it combined with another medication? I'm trying to figure out something other than Zithromax or Biaxin to mix it with and ask my Lyme doctor about.
Jill
Posted by MariaA (Member # 9128) on :
I found the stuff much cheaper through an overseas pharmacy (haven't ordered it yet): pharmacychecker.com turns up different pricing if you search for Alinia versus it's generic name- do search for both. I seem to recall that it was cheaper if you searched for Alinia, oddly. Some kind of glitch.
I feel like crap on it, I think it's a herx of some kind. However, my air hunger is better. unfortunately I can't tell if it's from alinia or from these Chinese herbs I just started around the same time.
Posted by Myco (Member # 9536) on :
Chris,
I also would be curious what combo you are on.
I am on BLT, Enula, Zhang's Artemisia and will be adding Alinia as soon as it arrives.
Beginning to feel like crap on the Zhangs Artemisia. Cold all the time and nauseous.
Posted by chris_s (Member # 19888) on :
quote:Originally posted by Jill E.: Chris,
This is encouraging news! Way to go!
Are you taking it alone or is it combined with another medication? I'm trying to figure out something other than Zithromax or Biaxin to mix it with and ask my Lyme doctor about.
Jill
HI, my list is kind of heavy at the moment (within the last 3 weeks it got this way, was much smaller for previous 4-5 months):
Alinia - 3x day Omnicef - 3x day Trental - 3x day Azithromycin - 1x day (500mg) Cholestyramine - 3x day Gabitril - 1x day (at night) (will be adding malarone soon)
Chromium picolinate - 1x day Probiotics - 3x day Chlorella - 1x day (30 tabs evening) Myco - 2x day (herbal complex) DFS formula - 1x day (mostly vitamin supplement)
hth
Posted by bv (Member # 9578) on :
I took alinia for 2 years. My doc used it as a cyst buster in place of flagyl. I found it relatively easy to take. (If you put alinia into the search function on this site, you will see some discussions from 2 years ago.)
It did not cure me--not sure it did anything one way or the other. It does turn all your bodily fluids a radioactive yellow---goes away w/i 3 days of stopping alinia.
Other than that, i did not notice any especially bothersome side effects.
Good luck
Posted by lymeHerx001 (Member # 6215) on :
made me herx, had to stop
Posted by mandy614 (Member # 16524) on :
I just recieved Alinia in the mail so I will be adding alinia 2 x day to my current protocol of biaxin, mepron, bicillin, bactrim, plaquenil.
I'll report after I have taken it a few days! I'm avoiding for the weekend, it as I know some have had bad reactions on it.
Does anyone have any opinion if it is safe with everything else I'm on?
Mandy
Posted by Jill E. (Member # 9121) on :
I'm starting today.
In terms of the yellow bodily fluids, I read on the Alinia website it can turn the eyes a pale yellow.
This worries me because yellow eyes can indicate jaundice and I had liver damage from Ketek.
Did anyone get yellow eyes?
Jill
Posted by Michael_Venice (Member # 17254) on :
Jill,
My eyes haven't gotten yellow. Body fluids, yes.
Maybe you should have your liver enzymes checked as a regular thing if your liver is weakened....
Good luck, please keep us posted.
Posted by Jill E. (Member # 9121) on :
I always have my liver checked on a very frequent basis, thanks to my experience with Ketek.
Jill
Posted by MariaA (Member # 9128) on :
hey, those of you who are mail-ordering it , could you list the pharmacy you're using or at least the pricing you're finding?
Posted by electrolite (Member # 16404) on :
I only took Alinia for two weeks about 1.5 years ago. It's VERY expensive, especially when you don't have insurance!
I didn't really herx on it, other than having more fevers and hot extremities.
It seemed to help for a short while, but that didn't last long.
A naturopath I saw said that it really doesn't work for Lyme; it was designed to kill amoeba.
He said its creator is promoting it as a cure-all for Lyme at all of the Lyme doctors' conferences, but it wasn't designed for that.
Posted by Erica741 (Member # 15186) on :
quote:Originally posted by electrolite: A naturopath I saw said that it really doesn't work for Lyme; it was designed to kill amoeba.
He said its creator is promoting it as a cure-all for Lyme at all of the Lyme doctors' conferences, but it wasn't designed for that.
Great. So if Alinia doesn't treat Lyme, then why are LLMDs having patients spend over $1000/month on this medication?
And why are these patients not very angry that this expensive med does nothing?
Posted by Michael_Venice (Member # 17254) on :
Erica,
I certainly am no where near better, but....
We've all read through posts here where X thing has worked for someone, and Y hasn't. Those of us who are desperate are often searching SO HARD for WHAT helped someone with our symptoms, duration of illness etc.
And it seems like there is nothing that consistently works for everyone. Some people take 5 different antibiotics/combos....and say it's the only way to get better. And I read that with despair, because I can barely handle one.
I've been misdiagnosed (as so many), blown off, etc...by many doctors. I don't trust anyone anymore, and it makes it hard to trust now. Really hard. I still don't know what I believe about lyme, babesia....these things I'm fighting.
The LLMD who first diagnosed me said he had NEVER seen anyone get sick for more than a few days on antibiotics, only that they get sicker and then are better. When I told him how sick I was on Ceftin, he said he thought I was being dramatic. Now, this is the doctor that diagnosed me, finally. And I'd already come here, and KNEW that other people got too sick on some drugs, or had to start slow, etc.
But still, it was confusing to me. I changed LLMD's because I needed someone who has experience with tougher cases.
I'm getting off track, though. I suspect that a doctor must sincerely believe or have experience that it helps some people. Maybe it will, maybe not. I also think it's primarily for babesia, with some doctors believing that it's a cyst-buster as well.
The whole thing sucks. It seems like a lot of us are in constant states of confusion, frustration and not understanding. Which infections we have, what treatments, how sick we are getting ,etc. And a really scary thing is that we have to try all of this poison, FEEL poisoned for longer than seems sane....to see if something is helping.
I'm not trying to knock the naturopath--I see one as well. But remember where someone is coming from. I don't think any of the doctors have a monopoly on the truth in this.
if my doctor was selling me the Alinia himself, then I'd be worried. In the meantime, I'm taking this damned poison.....hoping it puts me ahead.
Look, please understand, I'm not defending or trying to criticize any one position on this.....we all have a lot to be angry about.
Posted by mandy614 (Member # 16524) on :
Maria
I went through the drug company, they sent me one bottle based on the fact at the time I had no insurance but I do now. Not sure if 15 days will do anything or not, but if we do in fact have parasites this med should help us.
Posted by bv (Member # 9578) on :
Michael Venice, i agree with your post. I have received different opinions from different docs with regard to what meds to take & what works & what doesn't. it is terribly frustating & expensive & confusing.
Problem is, imo, no one knows what works & what doesn't work. Hell, no one really knows if what i have is LD or something else.
And we, as the patients, keep taking these abx which, at a minimum are rough on our bodies, and may be poision long term, because we have no choice. Everyone here wants to get better.
Sucks to have LD.
Posted by Erica741 (Member # 15186) on :
quote:Originally posted by Michael_Venice: I also think it's primarily for babesia, with some doctors believing that it's a cyst-buster as well.
Michael: Yep, that was my understanding of what Alinia is being used for in Lyme patients.
I replied to Electrolite's post out of concern if what his ND says is in fact true...That Romark is promoting it as a "cure-all" for Lyme.
What we do know: Alinia is an antiprotozoal agent approved by the FDA for treating certain intestinal parasites.
As an antiprotozoal, it's not a stretch if LLMDs are finding Alinia helpful for treating Babesia and/or as yet unidentified protozoa.
Given Fry Lab's recent discovery of a protozoal "mystery bug", it seems highly probable that Alinia could be a useful drug for many chronic Lyme patients even if we don't know exactly how it helps.
Isn't it also unknown exactly how Flagyl and Tindamax work as cyst-busters? Another example of not needing to know exactly HOW a drug works to find that it tends to improve symptoms by killing something keeping us sick.
Posted by MariaA (Member # 9128) on :
Question: -has anyone taken it and NOT had bright yellow urine or had your urine stop being artificially colored after a while?
-was it Alinia or the generic that you were taking
-has anyone found a reputable overseas source of it?
I'm taking some generic from India that a friend bought for me (it's actually quite cheap from overseas now that it's available in generic).
I'm just wondering if it might be counterfeit (unlikely given where it was bought and who bought it for me), since my pee isn't really turn bright yellow anymore.
Posted by electrolite (Member # 16404) on :
If it's helping some of you, then that's great. I hope it does if you're taking it. I'm sure we all have some sort of parasitic infections along with the Lyme, so it's good to get rid of those too.
Posted by MariaA (Member # 9128) on :
OK, I think it's becoming clear to me that the days that I take it I feel like crap. Really. I wasn't totally sure before.
Is that happening to others? Did it abate as time went by or you got healthier?
Posted by Michael_Venice (Member # 17254) on :
maria,
in what way do you feel bad?
I often feel pretty bad when I take it.
Posted by MariaA (Member # 9128) on :
Stupid and tired and distinctly emotionally 'flat' (which some other drugs have done to me, anytime I've been on Mepron and Biaxin for a long time without one day off)
Posted by Jill E. (Member # 9121) on :
I'm only on day five of Alinia (combined with Biaxin) but developed stomach pain, loss of appetite and mild nausea, with intermittent mild headache and fatigue ever since starting it. I looked up typical adverse reactions and all of these are listed as common, so I will stick it out.
This is my first drug for Babesia so I have years of the critters to kill off.
Jill
Posted by Michael_Venice (Member # 17254) on :
bumping
Posted by Myco (Member # 9536) on :
What dosage are you all taking?
Posted by MariaA (Member # 9128) on :
1000 mg twice a day, for 2 or 3 of weeks at a time, with a few days' break, this cycle is supposed to be repeated for a few months.
Posted by Jill E. (Member # 9121) on :
I'm taking 500 mg. twice a day, no breaks. Wow, Maria, no wonder you're getting a strong reaction, although I have heard others being prescribed that dosage.
My LLMD knows I'm super-sensitive to everything and we always have to start at teeny doses and have me ramp up, even though it gives the pathogens too much of a heads-up of the treatment, which isn't good.
Jill
Posted by chris_s (Member # 19888) on :
I am on 500mg 3 times a day.
Posted by cottonbrain (Member # 13769) on :
Maia, don't feel alone -- alinia affected me the same way.
i took it for one month, three times. I never got used to it. I don't know if it helped or not but i am so happy to be off it.
Posted by chris_s (Member # 19888) on :
i find it very easy to take. not to offend those that have problems with it, but in relation to other meds we are subjected to, this is a no-brainer.
Posted by jam338 (Member # 14002) on :
Maria, I was on it for one month. I really don't recall it making my pee neon yellow. I think I would recall something like that if it had happened. Mine was from a USA pharmacy (Costco).
Posted by MariaA (Member # 9128) on :
thanks for that info, I was wondering. I think other stuff that supposedly colors people's urine doens't seem to affect mine all that much. I do drink a TON of water so maybe it's diluted compared to someone else's water intake.
Posted by 'Kete-tracker (Member # 17189) on :
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?
Posted by Michael_Venice (Member # 17254) on :
Kete,
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.
Posted by mandy614 (Member # 16524) on :
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?
Thxs Mandy
Posted by Jill E. (Member # 9121) on :
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
Posted by Myco (Member # 9536) on :
Mine just came in the mail from Canada drugs and says Nitazet (500mg tabs) from Glenmark Pharmacueticals. Is this what you all are taking?
I think I am supposed to take 500mg 2x daily. Did all of you start all at once or build up?
I am already on 200mg Minocin daily and 250mg Zith daily, artemisia 3x daily and herbs.
Posted by Myco (Member # 9536) on :
Bumping.
Posted by mandy614 (Member # 16524) on :
Myco
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.
Posted by Jill E. (Member # 9121) on :
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
Posted by mjbucuk (Member # 843) on :
Myco, so you order from canada... and spend $700 for a month supply? Does one need a prescription?
Posted by Michael_Venice (Member # 17254) on :
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.
Posted by mandy614 (Member # 16524) on :
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.
Posted by mojoe128 (Member # 20182) on :
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.
Posted by Carol in PA (Member # 5338) on :
Mojoe,
Welcome to LymeNet!
Carol
Posted by Jill E. (Member # 9121) on :
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
Posted by mandy614 (Member # 16524) on :
Jill
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!
Posted by Michael_Venice (Member # 17254) on :
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)
Posted by Jill E. (Member # 9121) on :
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
Posted by MariaA (Member # 9128) on :
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.
Posted by Michael_Venice (Member # 17254) on :
Maria,
would you mind defining "temporary" to me....
I'm making a joke, but....your probably know what I mean.
Posted by Jill E. (Member # 9121) on :
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
Posted by stjohn (Member # 15274) on :
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.
Posted by Jill E. (Member # 9121) on :
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
Posted by TF (Member # 14183) on :
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.
Posted by Jill E. (Member # 9121) on :
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
Posted by stjohn (Member # 15274) on :
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...
Posted by Michael_Venice (Member # 17254) on :
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.
Posted by Michael_Venice (Member # 17254) on :
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.
Posted by Jill E. (Member # 9121) on :
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
Posted by Jill E. (Member # 9121) on :
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. ]
Posted by MariaA (Member # 9128) on :
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.
Posted by pryorka (Member # 13649) on :
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.
Posted by xoxoxox (Member # 18778) on :
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?
Posted by Michael_Venice (Member # 17254) on :
bumping for updates
Posted by Hoosiers51 (Member # 15759) on :
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.
Posted by Michael_Venice (Member # 17254) on :
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....
Posted by Hoosiers51 (Member # 15759) on :
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.
Posted by Michael_Venice (Member # 17254) on :
Hi.
Artemisin and enula also. No antibiotics now.
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.
Posted by Hoosiers51 (Member # 15759) on :
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.
Posted by Michael_Venice (Member # 17254) on :
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.
Posted by MariaA (Member # 9128) on :
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.
Posted by MariaA (Member # 9128) on :
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.
Posted by Hoosiers51 (Member # 15759) on :
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?
Posted by MariaA (Member # 9128) on :
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.
Posted by Cass A (Member # 11134) on :
Alinia does have a very long half-life.
Check out the drug data on line or the package insert that came with it.
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