LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter



Tax deductible

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.
In the United States, your donations are tax deductible.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Suggestions for Tolerating Alinia

 - UBBFriend: Email this page to someone!    
Author Topic: Suggestions for Tolerating Alinia
Infinite1
Junior Member
Member # 47242

Icon 1 posted      Profile for Infinite1     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm a little over 2 years of treating Lyme and coinfactions (babesia duncani, EBV, & Mycoplasma). I was feeling like quite well, ~75% or so on a good day however have just begun taking Alinia.

I've been prescribed to take 1g x2 a day however after taking just a quarter of that it immediately began a herx reaction that is akin to having been run over with a truck, that wonderful flu/hangover feeling that we all have come to know all too well. I see little point in ramping up my dose until this attenuates to some degree, it would surely be much worse on my immune system as I wouldn't be able to sleep. On the other hand I understand this is a necessary evil, and I need to make sure that CNS plasma levels are high enough...

Anyway, just looking for suggestions for how to tolerate this a bit better. As of right now I'm upping my activated charcoal, using cholestyramine, and performing several enemas a day- these keep me relatively ok but certainly not enough if I were to increase my dose. The last two nights I've used an infrared sauna and castor packs, surprisingly this had almost no discernable effect.

I think at this time I may do 3 days on 3 days off, perhaps increasing the dose by 1/4 of a pill each run (125mg). I worry that this may result in some resistance to whatever microbe is being targeted (I assume babesia and related parasites) however I honestly can't tolerate more than 3 days of this muscular and skeletal pain. Earlier in my treatment I was certainly less trigger shy, this was when I assumed it could be beat in a relatively short period.. I endured far too much trauma in doing so and will never put my body through that much pain, I simply don't think I could do it again- it felt I was bartering with soul on some metaphysical level just to make it through that hell.

Anyway, just hoping to get some feedback. From those that have gone through this experience with Alinia.

[ 12-30-2015, 06:59 AM: Message edited by: Infinite1 ]

Posts: 6 | From United States | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I thought standard dose was 500mg twice daily?

Are you sure you are to take 2 tablets twice daily for 1g twice daily? I could see how that might be hard.

Maybe you could talk to your doc to clarify your dose?

I find that 500mg twice daily really helps me with coinfection, we think Babesia, migraines.

Good drug if you tolerate it!

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Infinite1
Junior Member
Member # 47242

Icon 1 posted      Profile for Infinite1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Nope it's 1g x2 a day. Not entirely sure if it is a standard dose or not, my doc does tend to be rather aggressive in his treatments- much in contrast to others(non-LLMD's) who wouldn't touch it. Still 500mg x2 a day isn't really possible right now.

I've taken Alinia before but the effects were so masked by my symptoms at that time that I had no idea what to attribute them to. Now that I've felt a bit better I can't stand to go back into that dark hole.

Posts: 6 | From United States | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Alinia hits proto (FL1953) hard which could explain a big herx (run over by a truck). I take 500mg 2x a day. I have to do extra detox and more anti yeast stuff while on it but it sounds like you're doing that already.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
k84
LymeNet Contributor
Member # 32738

Icon 1 posted      Profile for k84     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just never could tolerate it. Just never ending crappy feel while on it, go off, feel better.
Posts: 102 | From Rural Michigan | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
Infinite1
Junior Member
Member # 47242

Icon 1 posted      Profile for Infinite1     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Catgirl:
Alinia hits proto (FL1953) hard which could explain a big herx (run over by a truck). I take 500mg 2x a day. I have to do extra detox and more anti yeast stuff while on it but it sounds like you're doing that already.

Yea, I've never been tested for FL1953 but I've always wondered about it. My symptoms are definitely in line with a strong protozoal infection, babesia WA1 is either a really strong bastard and/or I have a secondary protozoal infection. My last lab results were stereonegative for WA-1, although were elevated previously. I honestly don't put much stock in these labs however since they are very finicky in nature and the integrity of them is contingent on how it is drawn, stored, and time frame of shipment to lab- a lot of variables.
Posts: 6 | From United States | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
Infinite1
Junior Member
Member # 47242

Icon 1 posted      Profile for Infinite1     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by k84:
I just never could tolerate it. Just never ending crappy feel while on it, go off, feel better.

Trust me I would like to do nothing else then to forget about it. I do truly think it is extremely effective, almost too much. It elicits the hallmark symptoms of systemic inflammation, inflammation that undoubtedly is a result of oxidative stress from immune system recognition of a pathogen.
Inflammation is actually a defense mechanism. I would guess if I were to run another test for WA-1 after or during taking this it would be highly positive. Incidentally there are reports of individuals with ALS that have tested positive for Lyme, Babesia, or FL1953 who during treatment can have life threatening effects if not carefully tailored and dose gradually increased. I suspect that we are no different, and the effects are (somewhat) linearly related to germ load, albeit contingent on hepatic clearance so perhaps not quite linear.

Additionally it seems to 'clean' me out and evoke gastric motility- something that is a bit of an issue for me (sorry to go there). I'm hoping this will normalize after taking this for a longer time- we shall see.

Posts: 6 | From United States | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
Infinite1
Junior Member
Member # 47242

Icon 1 posted      Profile for Infinite1     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Infinite1:
[QUOTE]Originally posted by k84:
[qb] I just never could tolerate it. Just never ending crappy feel while on it, go off, feel better.

Trust me I would like to do nothing else then to forget about it. I do truly think it is extremely effective, almost too much. It elicits the hallmark symptoms of systemic inflammation, inflammation that undoubtedly is a result of oxidative stress from immune system recognition of a pathogen.
Inflammation is actually a defense mechanism. I would guess if I were to run another test for WA-1 after or during taking this it would be highly positive. Incidentally there are reports of individuals with ALS that have tested positive for Lyme, Babesia, or FL1953 who during treatment can have life threatening effects if not carefully tailored and dose gradually increased. I suspect that we are no different, and the effects are (somewhat) linearly related to germ load, albeit contingent on hepatic clearance.

On that note- additionally it seems to 'clean' me out and evoke gastric motility- something that is a bit of an issue for me (sorry to go there). I'm hoping this will normalize after taking this for a longer time- we shall see.

[ 12-30-2015, 09:45 PM: Message edited by: Infinite1 ]

Posts: 6 | From United States | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
norcal
LymeNet Contributor
Member # 29829

Icon 1 posted      Profile for norcal     Send New Private Message       Edit/Delete Post   Reply With Quote 
Infinite ,I am a past user of Alina. I had been prescribed a HUGE dose in the beginning of my treatment,needless to say I had a reaction that in retrospect probably was a damaging event. I stuck it out to the two month mark before throwing in the towel. I know this is a powerful killing agent so use with caution and have major detox support in place. Babesia and other critters are on the run be sure of that! Drink lots of water and don't mind the green pee, thats normal.
Posts: 341 | From northern california | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
norcal
LymeNet Contributor
Member # 29829

Icon 1 posted      Profile for norcal     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just re- read your post,sounds like you are on the right path.
Keep in touch with your doc,you may want to readjust your dose as you go along.
Me too on the enemas,seemed to get me through the worst of the herxheimer reactions.

Posts: 341 | From northern california | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
Infinite1
Junior Member
Member # 47242

Icon 1 posted      Profile for Infinite1     Send New Private Message       Edit/Delete Post   Reply With Quote 
OK. So I'm beginning to suspect part of the issue with Alinia is not only does it target parasites, protozoa, and bacteria but it is also an effective cyst buster. I'm currently running Alinia as a monotherapy, I've taken off taking it for the last two days and there really hasn't been much improvement as you would suspect if it were a herx. In fact I'm back to the same dizzy headed, heavy body, headachy feeling that I remember having very early on into this illness years ago. My guess is that it is breaking down some of those cysts and the bacteria are now back out in the open. ugh.

I'm going to grab some doxycycline, supposedly doxy induces rapid cyst formation, and hope they go back so I can enjoy my NYE. lol. Happy New Years!

Posts: 6 | From United States | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835

Icon 1 posted      Profile for Tammy N.     Send New Private Message       Edit/Delete Post   Reply With Quote 
Coffee enemas. Daily!!!
Posts: 2238 | From East Coast | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170

Icon 1 posted      Profile for bluelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Did the doxy help?

--------------------
Blue

Posts: 1538 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
nomoremuscles
LymeNet Contributor
Member # 9560

Icon 1 posted      Profile for nomoremuscles     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had to take it with food, as I do all my pills, sandwiched right in the middle of a meal, with a big mouthful of food.

I had an enormous reaction, too. An almost hallucinogenic Herx. Terrible. But it only lasted about a week, and then I had no problems at all. I stayed on it for eight months, along with various other abx and antimicrobials. But in the end, it did me no good. No improvements, in fact I got worse.

Posts: 842 | From Eastern USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2019 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


Home | Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Webmaster