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Post by countrysalvage on May 11, 2024 10:48:51 GMT -8
Mom has been using Alinia in combo with other abx/supplements for treatment. She has been developing diarrhea after starting the Alinia. It usually starts within 2-3 days of starting Alinia and usually subsides within 1-2 days of stopping. I'm leaning toward it being a herx rather than side affect as it can vary when she has it after taking Alinia. She might have it after one dose with big herx or it may take a few days to build up. Still working on how to solve it. Might do shorter stints of the Alinia. The other abx she uses don't give this reaction. Her liver enzymes are also higher on Alinia so far so we are still monitoring them. I'll plan to update how things go and any thoughts are welcome. Thanks.
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Post by RainyCloud on May 11, 2024 21:36:26 GMT -8
Hey Country,
Sorry to hear about this!
I'll just share some of my random thoughts...
I think what makes it difficult is that it's unknown why this is happening with Alinia.
It's mentioned as a side-effect in the leaflet, but not the reason why. So for example:
- Is it because the amount of dead toxins getting to be too much after a few days?
- Is Alinia itself causing inflammation to the stomach lining?
- Is Alinia somehow killing off good bacteria, even though it's not an antibiotic?
- etc.
So maybe if it's inflammation, something like Omega-3 would help reduce inflammation in the gut.
Or if it's bacteria related, probiotics might help.
If it's toxin related, she might benefit from taking a binder.
In any of these cases, it's possible that Psyllium Husk would help absorb some of the water, making it potentially stop.
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Post by countrysalvage on May 13, 2024 4:34:13 GMT -8
Hey Country, Sorry to hear about this! I'll just share some of my random thoughts... I think what makes it difficult is that it's unknown why this is happening with Alinia. It's mentioned as a side-effect in the leaflet, but not the reason why. So for example: - Is it because the amount of dead toxins getting to be too much after a few days? - Is Alinia itself causing inflammation to the stomach lining? - Is Alinia somehow killing off good bacteria, even though it's not an antibiotic? - etc. So maybe if it's inflammation, something like Omega-3 would help reduce inflammation in the gut. Or if it's bacteria related, probiotics might help. If it's toxin related, she might benefit from taking a binder. In any of these cases, it's possible that Psyllium Husk would help absorb some of the water, making it potentially stop. Thanks for the ideas, Rainy. Good points. |
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Post by countrysalvage on Jun 8, 2024 6:12:57 GMT -8
Update: Mom is reacting strongly to very small doses of Alinia now, even 1/8 tablet which is about 60mg. She may just not need it now so taking a break from it. We are focusing more on Lyme and maybe Bart and will possibly revisit Alinia later. Maybe Alinia breaks biofilms/kills parasites/Babs and brings the Lyme to the surface. Just not sure yet what it's doing. There's no question that it has helped her in the past.
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Post by RainyCloud on Jun 8, 2024 7:14:22 GMT -8
Thanks for the update Country! That's smart to take a break for now. Did your mom used to take a full tablet? It's very kind of you to help her so much  |
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Post by countrysalvage on Jun 8, 2024 14:52:21 GMT -8
Yes, Rainy. She was able to take 500mg 2x day for maybe several days at one point. It just seemed like she gradually began to tolerate it less each time she started to take it even after a break from it. This is one reason why I'm wondering if we need to work on a different layer right now.
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Post by RainyCloud on Jun 14, 2024 14:56:24 GMT -8
Oh wow, that's quite the reduction in dosage. I wonder what happened. That's very smart to take a break!
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Post by countrysalvage on Jun 22, 2024 13:13:40 GMT -8
So it appears that Bart was blocking Mom's treatment. She had gotten to where she wasn't tolerating Alinia or the Lyme abx we had her on. So switched to Rifabutin, Septra DS and she tolerated those a little better. Kept her on that and also then added back some Tinidazole. She tolerated the Tinidazole again and benefitted from it. Haven't tried Alinia again yet but hope to in the not so distant future.
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Post by RainyCloud on Jun 23, 2024 0:43:42 GMT -8
Hey Country,
Oh wow, so it was Bartonella that was blocking her treatment. I'm glad the Tinidazole helped her (and Rifa + Septra) and that she was able to tolerate it.
I'd be interested to hear how she does in the Alinia now that you're targeting the Bartonella.
One thing I've noticed is that peeling back the layers of the onion is not always in the same order for everyone.
On healingwell they are a big fan of Babesia first, and I do understand the reasoning behind that to an extend.
But I did lyme and bart first and it seemed to have worked for me (Babesia still left right now, of course).
So maybe with your mom it's the same as with me. Or is that not what you think is happening?
Regardless, I'm so happy you found out what the problem was! It must have been confusing when treatment suddenly comes to a stand still like that.
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Post by countrysalvage on Jun 24, 2024 7:36:30 GMT -8
Thanks, Rainy. Sometimes there doesn't seem to be rhyme or reason to how Mom and I have to treat. It's like we have to treat all three in a rotational manner to make progress and still be able to function that is. It seems like Alinia breaks down something that once again exposes the Lyme & Bart. |
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Post by RainyCloud on Jun 25, 2024 7:57:20 GMT -8
That makes sense Like you said, sometimes things just kind of behave without a reason! |
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Post by countrysalvage on Jun 25, 2024 12:03:55 GMT -8
Ok, guess we'll just have to lay off the Alinia for now and explore other options. Mom took very tiny dose of Alinia this morn and still had quite a severe reaction. She usually ends up throwing up eventually and having diarrhea. She's feeling a little better now. I'm still not convinced it's side effect though as it seems to hit her with symptoms she has at times already just greatly exacerbated. She has taken Coartem before so may try that again as well as hit Bart again.
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Post by RainyCloud on Jun 25, 2024 15:03:46 GMT -8
Hey Country!
Thanks for the update. That's a bummer and I agree, there might be other better options for now.
It doesn't sound like a side effect to me either. I mean, those 2 symptoms could potentially be a side effect for people, but that doesn't explain why your mom tolerated it at first.
Is your mom taking probiotics or anything? I know you mentioned Saccharomyces Boulardii for yourself, is your mom taking that too? That could maybe help in the future. Or maybe additional probiotics in addition to that one.
I hope you and your mom will be okay for the remainder of the evening!
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Post by countrysalvage on Jun 25, 2024 15:35:48 GMT -8
"I mean, those 2 symptoms could potentially be a side effect for people, but that doesn't explain why your mom tolerated it at first."
True.
Mom does take a probiotic but not Saccharomyces Boulardii. She might not tolerate that one as well. Thanks for the suggestion. I'll plan to keep it in mind. She's doing a bit better now, thanks. I actually think the Alinia might help her some when she takes it, but the other effects just don't make it worth it right now. And the Alinia seems to break biofilm, so she may feel even better when we give her some other abx like maybe we'll try Rifabutin and Septra DS again to see if they seem to mop things up.
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Post by countrysalvage on Jul 8, 2024 14:42:40 GMT -8
Update: Mom took Coartem, building to full dose over her three days on. It seemed to help her some but no real relief. Then we switched to Bart abx after those three days of Coartem. It has been a bit rough overall. So we decided to go back to Alinia starting today with an extremely tiny dose. We crushed the Alinia to powder and Mom put wet finger in the powder and basically took what stuck to her finger. She appeared to have some initial minor symptoms and then felt a bit worse a few hours later but did not have the throwing up, diarrhea, or severe nausea. She took a nap and felt better later today. So it very much appears like she had a herx with improvement and the very low dose kept it from being severe. Very thankful. Plan to keep trying low dose for now. It just seems like Alinia is very vital for her improvement at this time though low doses are needed now.
Note: the worst of her Alinia herxes lately have been about three hours after taking.
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Ok so turns out it's Monday 
