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
Posts: 322 | From Venice, CA | Registered: Sep 2008
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lymie tony z
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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
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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"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
Posts: 566 | From West Coast | Registered: May 2008
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posted
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.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
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?
Posts: 770 | From USA | Registered: Jul 2006
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Jill E.
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posted
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
-------------------- 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
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.
Posts: 770 | From USA | Registered: Jul 2006
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Jill E.
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posted
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
-------------------- 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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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
Posts: 655 | From USA | Registered: Sep 2007
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posted
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.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
Update: Energetically tested very poorly for this.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Jill E.
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posted
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
-------------------- 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 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.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
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.
Posts: 770 | From USA | Registered: Jul 2006
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posted
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
Posts: 247 | From Ca | Registered: Feb 2007
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Vermont_Lymie
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Member # 9780
posted
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. Posts: 2557 | From home | Registered: Aug 2006
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Jill E.
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posted
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
-------------------- 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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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!
Posts: 26 | From Napa, Ca | Registered: Apr 2009
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Jill E.
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posted
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
-------------------- 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
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.
-------------------- Symptom Free!!! Thank you all!!!!
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
Posts: 26 | From Napa, Ca | Registered: Apr 2009
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posted
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
Posts: 213 | From ohio | Registered: Jul 2006
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lymeHerx001
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Member # 6215
posted
made me herx, had to stop
Posts: 2905 | From New England | Registered: Sep 2004
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Jill E.
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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
-------------------- 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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Maybe you should have your liver enzymes checked as a regular thing if your liver is weakened....
Good luck, please keep us posted.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Jill E.
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I always have my liver checked on a very frequent basis, thanks to my experience with Ketek.
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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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?
-------------------- Symptom Free!!! Thank you all!!!!
posted
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.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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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.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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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.
Posts: 348 | From maryland | Registered: Jul 2008
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posted
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.
Posts: 213 | From ohio | Registered: Jul 2006
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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.
Posts: 408 | From California | Registered: Apr 2008
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MariaA
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posted
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.
-------------------- Symptom Free!!! Thank you all!!!!
posted
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.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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MariaA
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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?
-------------------- Symptom Free!!! Thank you all!!!!
I often feel pretty bad when I take it.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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MariaA
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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)
-------------------- Symptom Free!!! Thank you all!!!!
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
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
-------------------- 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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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
-------------------- 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
I am on 500mg 3 times a day.
Posts: 26 | From Napa, Ca | Registered: Apr 2009
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cottonbrain
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posted
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.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
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.
Posts: 26 | From Napa, Ca | Registered: Apr 2009
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posted
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).
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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MariaA
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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.
-------------------- Symptom Free!!! Thank you all!!!!
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