Alinia response

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Rikky1
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Date Joined Jun 2015
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   Posted 11/28/2017 8:47 PM (GMT -6)   
So I did a short stint of Alinia about 2 years ago which was 1 year after infection and 5 months after starting treatment. Took 1 pill 2x/day for 3 consecutive days a week for 3 weeks. Felt some reaction in my head but it was short lasting the first round, felt very little the second round and nothing the third round.

So started Alinia again yesterday this time I'm doing 1 pill 2x/day for 5 consecutive days a month for 3 months then re-evaluate. Felt that head thing yesterday but died down and figured going to have the same pattern as 2 years ago but around dinnertime tonight my nerves (main symptom) flared up big time.

Not sure what its hitting but apparently my babesia is (or almost) gone per my LLMD. Could be hitting some deeper areas but wondering what else it could be hitting?

I read a few posts from a while ago saying Alinia hits bart? Not sure why as its an anti-parasitical not bacterial.

Curious other reactions folks have had taking this?

Evanston1
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Date Joined Jan 2017
Total Posts : 410
   Posted 11/28/2017 10:15 PM (GMT -6)   
I'm currently on my 4th day of alinia and have had chest pain, palpitations, spine pain and increased light sensitivity today. When I took it about a year ago, it was very powerful. I had strong herx reactions to it.

TxBart
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Date Joined Jun 2017
Total Posts : 85
   Posted 11/28/2017 11:14 PM (GMT -6)   
I did a five day (2x/day) course. My LLMD was taking a shot in the dark and thought maybe my recent sleep issues were parasite related. It hit my head (bart) like a bulldozer. My LLND said bart can have some parasitic "tendancies" and it did not surprise her at all that Alinia could be hitting bart. I then researched and read quite a few posts about Alinia being used to treat all 3 B's. I'm getting ready to do another 5 day round. We'll see what it hits this time.

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 11/29/2017 12:13 AM (GMT -6)   
I took alinia for like 6 weeks. It flared up my nerve pain and made my lymph nodes swell up. Definitely hits bart too. And some viruses + cyst form lyme. Starting again tomorrow.

tickbite666
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Date Joined Mar 2014
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   Posted 11/29/2017 7:57 AM (GMT -6)   
I did a few rounds of Alinia several years ago in various ABX combos with little impact.

Last May I worked Alinia into my Tetra and Diflucan 2 week on/off pulse. Last summer extended to 3 weeks off, then tried 4 weeks off and back slid a bit. Now I'm staying at 2 ON and 3 OFF thought until spring.

Bart is my main target, but think the combo is also good for hitting Bb cysts and persisters.

Rikky1
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Date Joined Jun 2015
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   Posted 11/29/2017 9:12 AM (GMT -6)   
thanks everyone.

so i've seen several mention Lyme Cyst forms (also called L and round body). Recent data suggests that while they types might not be quite accurate the overarching phrase being used is persister forms.

With that said is Alinia considered a persister drug for Lyme? I've never quite heard it put that way but maybe its just the vernacular. In any event Alinia seems to have broad coverage that can be more effective against a wider range of parasites (versus flagyl/tinidazole), will hit viruses, busts up biofilms and can hit Lyme forms as well as some Bart.

Definitely seems worth trying for those who are chronically ill with these tick borne infections.

As I said I'm doing 5 consecutive days a month for the next several months so will keep folks abreast as I'm one of those chronic cases whose tried many types of abx combos/anti-malarials over the past few years so would be a good guinea pig on its efficacy.

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 11/29/2017 12:30 PM (GMT -6)   
tickbite666 said...
I did a few rounds of Alinia several years ago in various ABX combos with little impact.

Last May I worked Alinia into my Tetra and Diflucan 2 week on/off pulse. Last summer extended to 3 weeks off, then tried 4 weeks off and back slid a bit. Now I'm staying at 2 ON and 3 OFF thought until spring.

Bart is my main target, but think the combo is also good for hitting Bb cysts and persisters.


Tickbite are you seeing Dr. S P in Wilton, CT?

tickbite666
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Date Joined Mar 2014
Total Posts : 1664
   Posted 11/29/2017 1:44 PM (GMT -6)   
No, I see the LLNP in RI. She is pretty well connected with top LLMDs and has a patient that also sees Dr H so she consults regularly. My current protocol has got me back to 90% or better some days.

During recent office visit we spent a long time on Oils being used in lab experiments at John Hopkins by Dr Z (?). I ordered a bottle of Liposomal Oil of Oregano from Hopkinton Drug to take with my ABX pulse schedule and see what happens. She said taking capsules will help control dosage and reduce aftertaste. Might try cinnamon next.

tickbite666
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Date Joined Mar 2014
Total Posts : 1664
   Posted 11/29/2017 1:52 PM (GMT -6)   
Hey Rikki, see if you can squeeze in an extra refill before end of year. I hear Alinia is taking another big price hike next year.

My co-pays on both generic Tetra and Diflucan went from $10 to $35 per month without notice between last Sept refill and last week.

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 11/29/2017 2:27 PM (GMT -6)   
tickbite666 said...
No, I see the LLNP in RI. She is pretty well connected with top LLMDs and has a patient that also sees Dr H so she consults regularly. My current protocol has got me back to 90% or better some days.

During recent office visit we spent a long time on Oils being used in lab experiments at John Hopkins by Dr Z (?). I ordered a bottle of Liposomal Oil of Oregano from Hopkinton Drug to take with my ABX pulse schedule and see what happens. She said taking capsules will help control dosage and reduce aftertaste. Might try cinnamon next.


Ok. Good to hear. I honestly have never heard of any LLMDs prescribing tetra besides S P. You're LLNP is on the right track. I am going to try liposomal OoO soon too. I take regular OoO tablets now, but I think you need the liposomal form to get good penetration.


Back to Alinia. It is 5500$ for brand name in US for 60 pills. If you can't get this covered by insurance, I know that AllDayChemist carries it for cheap.

tickbite666
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Date Joined Mar 2014
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   Posted 11/29/2017 2:50 PM (GMT -6)   
Sheeks,

Tetra was the original Donta Protocol way back when all this started in the 80's. Google Sam Donta for interesting reading. He was actually my first LLMD back in 2010 but has since retired.

I tried to see SP in in Milton CT but he wasn't taking any new patients and actually closed his practice for a spell with a bad back when I change from Donta to current LLNP.

Rikky1
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Date Joined Jun 2015
Total Posts : 2925
   Posted 11/29/2017 3:18 PM (GMT -6)   
I did Liposomal Oil of Oregano for a while in capsule form didn't notice much from it.

Regarding Alinia it's already $100 a pill through my insurance and I have decent insurance so can't believe they're jacking it up even more.

As Sheeks said overseas pharmacies will do the generic for $1 a pill. Another angle I'm exploring is going to a compound pharmacy for the generic. I asked my next door neighbor who's one what the cost is will report back to give folks an idea if this is a route to take.

Not sure why generic isn't used as default here like Atovaquone is instead of Mepron?

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 11/29/2017 3:59 PM (GMT -6)   
tickbite666 said...
Sheeks,

Tetra was the original Donta Protocol way back when all this started in the 80's. Google Sam Donta for interesting reading. He was actually my first LLMD back in 2010 but has since retired.

I tried to see SP in in Milton CT but he wasn't taking any new patients and actually closed his practice for a spell with a bad back when I change from Donta to current LLNP.


Yes! I have read about Donta's studies. I just was under the impression that no one besides S P was currently doing it. Not saying he invented it... In fact, S P and Dana P have a facebook page with lyme videos. I asked S P why he prefers tetra over doxy and mino and he responded and recommended I look up the Donta studies, so I did.

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 284
   Posted 11/29/2017 5:01 PM (GMT -6)   
tickbite666 said...
I did a few rounds of Alinia several years ago in various ABX combos with little impact.

Last May I worked Alinia into my Tetra and Diflucan 2 week on/off pulse. Last summer extended to 3 weeks off, then tried 4 weeks off and back slid a bit. Now I'm staying at 2 ON and 3 OFF thought until spring.

Bart is my main target, but think the combo is also good for hitting Bb cysts and persisters.


PS: Could you tell me the dosage of diflucan and dosing schedule for lyme? I am going to mention it to my Doc on Monday.

bluelyme
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Date Joined Nov 2015
Total Posts : 4915
   Posted 11/30/2017 2:58 AM (GMT -6)   
Did low dose for a year with hh2.even kills virus saying it did better than tamaflu...knocked flu in 2 days for me with bvt ..it help beat bart back

tickbite666
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Date Joined Mar 2014
Total Posts : 1664
   Posted 11/30/2017 7:13 AM (GMT -6)   
I've used diflucan periodically over my many years of treatment for Candida control. Normally it was for a two or four week duration, then back to Nystatin for maintenance.

Right now I pulse Diflucan two weeks ON and recently increased form 2 week OFF to 3 weeks OFF along with the Tetra and Alinia. Dose is (1) 200 mg tablet 1x/day.

Off weeks I switch to NOW brand Candida Control.

Rikky1
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Date Joined Jun 2015
Total Posts : 2925
   Posted 11/30/2017 8:56 AM (GMT -6)   
Dr. J in DC has a typical protocol that adds Diflucan and Flagyl 2 days every cycle (a cycle can be 3 or 4 weeks in duration).

dbwilco
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Date Joined Mar 2016
Total Posts : 297
   Posted 12/1/2017 5:47 AM (GMT -6)   
Sp in Wilton also does diflucan and liposomal ooo, so i too thought you were seeing him

tickbite666
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Date Joined Mar 2014
Total Posts : 1664
   Posted 4/11/2018 2:14 PM (GMT -6)   
Pulsing update.... I just completed my first 4 week OFF cycle since last Sept attempt that caused a noticeable back slide so I stayed on 2 week ON and 3 weeks off through winter.

I always run my ABX cycles starting on a Monday, But late last week into Saturday I notices some flaring of neuropathy and neck creaks, so I started my scheduled 2 week Tetra/Alinia/Diflucan/OoO pulse a day early on Sunday.

In some past pulse cycles I would notice a slight herx or flaring of my remaining neuro sx on the 4th and 5th day into the pulse schedule, then would gradually decrease and go through minor fluctuations.

We today is day 4 back on ABX after the 4 week OFF test. I started the day with some minor muscle twitching in my left thigh. By noontime its was blasting away in the same spot, and brain fog and stiff neck is flaring too along with my typical peripheral neuro issues. I've only had an occasional random light muscle twitch since I can recall.

So not sure if its Bart or Lyme getting pissed off after the 4 week vaca, or whatever.

I'll go back in my sx log and check on timing of my last muscle twitch episodes.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4915
   Posted 4/11/2018 10:32 PM (GMT -6)   
...maybe it hits toxo{loves brain} and or proto ...u still have your rife? my llmd calls it yellow gold

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 4/12/2018 6:22 AM (GMT -6)   
Blue, I've never had a rife. Its probably the only thing I haven't tried. I've also considered the proto connection many times. But my LLMD is not fan of ivermectin.

Anyway, the twitching stopped sometime last night, and so far so good this am. I just hated to see some of those old sx return with such ferocity yesterday after only 4 weeks OFF abx. But that's why we pulse.

yellow gold.... I like it, how appropriate.
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