posted
My LLMD has had me on Alinia (& Rifampin) for almost six months now and honestly, everything still feels the same as it did when I started it.
He seems to think Alinia is the answer to all of the TBDs - most of his patients are on it, I think.
It seems like people with Babesia actually have a response to it. He believes I have Babesia even though there have been none of the symptoms specific to it.
Based on the symptoms I do have, Bart & Lyme seem most likely.
Doss anyone else's LLMD have this much faith in Alinia?
Do they believe it is beneficial for any of the TBDs?
Thanks
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you taking the brand name or generic? Sometimes, the generics really are NOT the same.
Also, if the meds get too hot they can loose their effectiveness.
All that considered, if you've been on a plan for 6 months and you see no change, it is understandable to consider a change of plan.
Are you taking good liver support and other nutritional supplements? Are you on a gluten-free diet? Sometimes that makes a big difference in the effectiveness of a protocol.
Others will be along with more to add, I'm sure. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Asked my doctor if I could take Alinia because I had a $1,200 bottle sitting at home. His words " that stuff will kill you ". You can take it for 3 days. I guess it doesn't effect everyone the same way.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I'm not a big fan of it. I've taken it twice, for 4 months in 2008 and for about a month ending in September when I had a severe allergic reaction to it all of the sudden. I've just never noticed a change in how I feel while taking it.
Posts: 236 | From Washington | Registered: Jul 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I took it for about four months last year and really didn't notice any improvement.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
I am confirmed to have babesia mocroti, and I herx like heck on Alinia. The very first pill had me bedridden for a day. Then I got used to it. But, last week (after 5 months on Alinia) I herxed so hard it put me in a wheelchair; I should have gone to ER but hubby said no. I blame the wobenzyme on the stronger herx. My herxes are classic: pain, shaking chills, fever (102 degrees), muscle and joint pain, low blood pressure (90/58), etc. Really sux.
Posts: 69 | From So Cal | Registered: Jun 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I think that adding Alinia to my babesia 'protocol from hell' really helped get rid of my last babesia symptoms. It also is reported to act similarly to Flagyl as a 'cyst-buster', which I think is very important in my case, but I don't know if there's any real evidence behind that. I still take it with my Rifampin/Bactrim protocol, assuming that I still have some babesia to deal with. I'm alternating weeks of alinia with weeks of Flagyl.
My experience is that it's not very sudden in it's effects and it seems like lots of people here have posted to say that they didn't notice major effects from it, unlike, say, Flagyl or Mepron. It did make me herx, mostly in that it made me very 'emotionally flat' and completely unmotivated for the first few courses (of 20 days) that I took. I'm not seeing major side effects anymore.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
The only time I can really get a "herx-like" response with babesia treatment is from herbs. I don't know if that means that for my babesia, herbs are more powerful, or what.
With the meds, I start them, there's not much difference, and then when I stop them, the very first day off, I get babs symptoms like night sweats and/or vivid dreams. Which are symptoms I normally only get when adding a babs herb.
I think Alinia "affected" my babs, but would not be curative. I didn't seem to have much response to it while on it, except I had some petechiae show up. Then when I stopped it, night sweats.
I think I have babesia duncani, because that's what I tested positive for. Also positive on the FISH from Igenex.
But I have this theory that for those of us with duncani, the meds that help the microti people can be very "underwhelming" to us. So far, I'm not impressed with any of the solutions Big Pharma has thrown at me.
So far Enula and Crypto-Plus are my favs. Going to start Clindamycin soon though, so we'll see how that goes. I am not ruling out Lariam or Chloroquine or Quinine. My doctor may add those in the future, once we see what the Clinda does.
Mepron and Malarone seem to not be very helpful. Malarone may help a little, but I'm not "wowed."
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Thanks everyone for your input. I think I'll post another thread to see if there are any Alina users who don't have Babesia and what kind of response they've had.
They will be putting my PICC line back in my arm in a couple of weeks but I think I am going to request a different abx partner to go with the Rocephin.
Any suggestions?
Thanks again!
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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