posted
OK. Doctor took me off antibiotics and antifungals in August for genetic testing. Long story but treatment was confusing picture.
Results came back negative which is awesome. Still having gut issues so will not be going back on antibiotics.
Can I take malarone with herbs?
Posts: 538 | From kentucky | Registered: Nov 2011
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Hi, soccermama,
What tests did you have run, and which company? That's great about no issues with them. You didn't have any mutation?
I'm not sure about the proper protocol for that combination. Usually they use Zithr. with malarone so no resistance issues; and alot of people pulse artemisinin with this. I did take malarone by itself briefly this summer since I am so sensitive to things. So, I would think malarone and herbs would probably be ok. You're doctor will have to work out the details.
I hope you can figure out why you're having gut dysbiosis. Hope it's not yeast; hope it's not parasites.
good luck
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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quote:Originally posted by soccermama: Still having gut issues so will not be going back on antibiotics.
Can I take malarone with herbs?
Malarone is not an antibiotic?
Our daughter has had as much healing with cryptolepis/sida/alchornea (WoodLandEssence) as she had with malarone. Same symptom resolution - executive function improvement, initiative improvement.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Great to hear your daughter is doing better!
I am on malarone and herbs. Malarone is a malaria type med (not abx).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Thanks for the input. I had genetic testing for porphyria which is an inability to synthesize heme.
I have these terrible flares that come out of nowhere. Extreme abdominal pain, neuropathy, and nausea. Grateful that hydration and pain meds seem to help.
I seemed to do the best when I was taking malarone with zithromax.
So, I want to try some herbals to see if they are helpful.
Posts: 538 | From kentucky | Registered: Nov 2011
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
soccermama,
What company has the genetic test for porphyria? Was it a regular blood test through a company like Labcorp or Quest? Or was it a specialty lab?
thanks
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
I had the testing done at The Mount Sinai Genetic Testing Laboratory in New York City. My insurance covered it.
The results are 97% accurate so I can rest assured that I am negative.
I am considering treating for KPU because it is also related. We will see.
Posts: 538 | From kentucky | Registered: Nov 2011
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Thanks, soccermama, that's helpful info. I called the Porphyria Foundation in Texas today and they told me that Mount Sinai has a porphyria doc. (actually two docs) Another one in Philadelphia.
I hate to think what those tests cost without insurance!!
posted
I didn't actually see the doctor my LLMD ordered the test. How cool was that?
What are your symptoms? I was tested for three types. The price was $1600 without insurance so I am glad that we have UHC.
Posts: 538 | From kentucky | Registered: Nov 2011
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
That is great that you got that squared away and know that is not your issue!
That is cool that your LLMD is knowledgeable enough!
At least that test was covered by insurance. It's just insane what it costs to try to uncover our health "stones."
I just posted on the porphyria thread that Keebler brought back up.
j13girl describes how and what happened to me to the tee. My brain gets overload when I try to adequately describe what I am like and what has happened. I just cannot really understand it or describe it. I mean, I can, but I can't, if that makes any sense-my brain just doesn't work like it used to.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I'm on Malarone and Artemisinin. Just went off ABX due to severe diareahh and yest. (Zith and Septra)
We will eventually add some herbs.
A-Bart will be the first, then back on ABX or some Babs herbs.
I'm glad you asked this!
Posts: 1761 | From USA | Registered: May 2006
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