Has anyone taken Alinia for parasites, or Lyme? AND sorry for being MIA

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Lymer
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Date Joined Sep 2012
Total Posts : 511
   Posted 8/8/2013 2:21 AM (GMT -6)   
Hey guys,

I'm really sorry I haven't been around more. My son and I moved in with family, and now we are about to move in to our own place this weekend (hopefully), and things have been pretty hectic.

So here's my current situation: A few weeks ago I had major diarrhea, I lost 28 lbs in a few short months, I couldn't eat. Went to my local dr and they ran tests. Eosinophils were through the roof - 30!! The norm range is 0-7 (I think), and I'm usually about an 8 or 9. My LLMD was very upset b/c the dr tested for parasites which of course came back negative. So dr did nothing, even though she herself said the tests are unreliable and she felt strongly that Strongyloides was the issue. She simply said she could not treat based a a neg test, and that was the end of that. My LLMD said I need to stop abx and focus on treating parasites. He said he feels like I was "falling thru the cracks", not getting proper care from my local dr, and that I should find a new one that will see me weekly for CBC, etc. He started me on Alinia, one every 12 hours for 12 days (6 pills with 3 refills), then 2 a day for 3 weeks on, 3 weeks off for about 5 months.
I'm also going for colon hydrotherapy next week, first time. 3 sessions. He says I need more but that's all I can afford right now (plus the office is a 4 hr drive each way, so I have to get a hotel room for a couple nights).
In addition I'm doing an OTC treatment called ParaGone, taking Artemisia, Probiotics, and a tincture of a microbial balancer #2 (crypto plus).


I just found out today that I have temporary Medicaid while they make a final decision on my case. I've been paying $200 for 3 days worth of Alinia (6 pills). Idk if my new Medicare plan will cover it, but if not, it is going to be $1,360 for 3 weeks worth of Alinia. INSANE!

Anyway....

Has anyone been on a regimen like this? How did it go for you? Any advice on any other things I can add to my treatment plan?

My LLMD told me that he's seen Lyme patients go in for colon hydrotherapy and "release" tape worms that are 3 feet long. It's horrifying!! Not to mention, this kind of thing has always been one of my biggest fears. I'm having quite a bit of anxiety over it, even though the parasites Dx wasn't a shocker. I guess I was just in a bit of denial before.

I'm sorry this has gotten so lengthy, but I want to mention one more thing.

I've recently heard that if the parasites are completely eliminated then abx treatment to kill the Lyme can drop from years to a matter of weeks to months. Has anyone heard this, or found it to be true?

Thanks so much for listening. I'm so anxious to "deworm" myself. I'll do anything at this point!!!!

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4415
   Posted 8/8/2013 4:07 AM (GMT -6)   
Yes it is possible that getting rid of parasites may speed up your treatment for Lyme... I think the antiparasitic meds may have properties that go after Lyme too (my opinion, not based on medical fact but based on observation).

In any case, if you do have parasites, they need to be eradicated no matter what...so I say go for it. And I hope your Medicaid covers or at least partly covers the Alinia...
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube; TPN-dependent
Meds: Flagyl, Azithromycin, Zofran, Acupuncture, etc.

Morti81
Regular Member


Date Joined Sep 2011
Total Posts : 186
   Posted 8/8/2013 5:09 AM (GMT -6)   
Check out Infuserve America for compounded nitazoxanide (generic equivalent) at approx 1/5th the price.

Otherwise sounds like a good approach, Alinia rocks IMO, and I hear good things about having your back passage washed out..... Something Hippocrates agreed with.

Hugh

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3894
   Posted 8/8/2013 6:29 AM (GMT -6)   
allimed is supposed to be very good for parasites as is sweet annie wormwood. Artemesia annua. I see that you are taking some of those. How are you doing other than that?
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
July 2013 - Weaning off of antibiotic treatment

Feel free to click on my name and shoot me an email. I have referrals for DE, PA, and NJ areas.

Lymer
Veteran Member


Date Joined Sep 2012
Total Posts : 511
   Posted 8/8/2013 6:10 PM (GMT -6)   
Thanks for all the replies!

Razzle- my LLMD said the same, that Alinia is good for Lyme too, which I assume was behind my doctor's decision to prescribe it long term. He didn't elaborate, but def mentioned it!

Morti81 - so that's a generic for Alinia?? I'll def check that out, thank you!!

Opugirl - I've never heard of allimed but will look into it. Is there a difference between artemisia and the artemisia annua? Also, doesn't artemisia have wormwood in it? I will def check it all out :-)
Other than that, I have a little more energy than before, thanks to the 5-MTHF supplement. I still have a lot of joint and muscle pain. Artemisia makes my joint pain flare like crazy. I stopped it back in Feb b/c it got so severe. This time I'm just trying to push through!
My oncologist wants to run more scans to make sure I don't have cancer hiding somewhere I guess. I'm going to do it for good measure, but I really think what she's seeing is the Lyme talking, and she's just not familiar with it, or wasn't taught to look for what my LLMD looks for. Hope that makes sense, brain fog is def still an issue!

What about you, how are you doing? I see you're weaning off abx. Does this mean you're feeling better, or going a different treatment route?

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3894
   Posted 8/8/2013 7:12 PM (GMT -6)   
Well, I haven't updated in awhile but sadly right off of abx and all the symptoms came back...I lasted two weeks off and probably could have gone another week. At my request we are treating bart with biaxin and bactrim. Its going to be a rough two weeks or so. Other than that I feel great!
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
July 2013 - Weaning off of antibiotic treatment

Feel free to click on my name and shoot me an email. I have referrals for DE, PA, and NJ areas.

Lymer
Veteran Member


Date Joined Sep 2012
Total Posts : 511
   Posted 8/8/2013 9:45 PM (GMT -6)   
opugirl, I'm sorry to hear that :-/
I had an allergic reaction to Bactrim and stopped all abx and experience the same thing...all those symptoms started quickly coming back :(
Up until the reaction, I felt better than I had in a very long time! I was taking Ceftin for about 6 wks and Bactrim for about 3 wks before the reaction happened. My LLMD said it was a herx plus allergic reaction so things got pretty tough for a few weeks. So, in that respect, I'm not doing too bad. It could always be worse!

Is biaxin also an antibiotic? I'm not familiar.

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3894
   Posted 8/9/2013 6:25 AM (GMT -6)   
Biaxin is clarithromycin. Also yes, wormwood is actually artemesia. There are different types though. Most common is artemesia absinthium but you want the annua. I thought I got the right one but had to re-order
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
July 2013 - Weaning off of antibiotic treatment

Feel free to click on my name and shoot me an email. I have referrals for DE, PA, and NJ areas.

Lymer
Veteran Member


Date Joined Sep 2012
Total Posts : 511
   Posted 8/12/2013 11:56 PM (GMT -6)   
Thanks for that info opugirl. I'll have to look at mine and see which I am taking. I've heard of clarithromycin. Does it seem to be helping?

angelamom
New Member


Date Joined Mar 2015
Total Posts : 4
   Posted 3/16/2015 10:04 PM (GMT -6)   
Alinia will treat biofilm, parasiste and cystic lyme - says my LLMD. We are doing a pre Lyme treatment using it for ten days (one pill every 2 hours). Most labs will not pick up paraistes. You have to have three stool tests and even then read by a very alert technician within the hour to really see anything. Alinia along with abendizole is one of the only meds against parasites that crosses the blood-brain-barrier. It is better tolerated than ivermectim by some.

jrpsf
Veteran Member


Date Joined Aug 2014
Total Posts : 1715
   Posted 3/17/2015 12:01 AM (GMT -6)   
I'm currently taking Alinia, Rifampin, and Biaxin. It's the first combination since I've been on the Pekana line of products for detoxing that completely kicked my butt. I started with just the Biaxin for a week then added the Rifampin and two days later added the Alinia. I was A-OK until being on the Alinia for 24 hours.
I was only able to stand up for about two minutes at a time for about 4 days and then for the next 5+ days I had nerve pain everywhere. I felt as if someone had poured gasoline on me and light me on fire.
My body has adjusted now but wowza. I know it means that it's working. If I feel great I don't make any progress but I didn't expect that to happen. The Alinia is 20 days on 10 days off.

My insurance tells my pharmacy that everything is denied. Once my Dr (in network or not) provides the reason I need the rx they approve. That is becoming more and more common due to the ACA.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4907
   Posted 5/8/2016 2:24 PM (GMT -6)   
Bump...has anyone else had experience with alinia?

Laker7491
Regular Member


Date Joined Aug 2015
Total Posts : 262
   Posted 5/8/2016 4:51 PM (GMT -6)   
Hi there, I've been reading about parasites so was glad to see it come up here. I just wonder if I should start taking them.

I'm seeing a LLMD for 8 months have been on antifungals for candidia 2 rounds, doxy for 4 weeks, Cefdinir for 6 weeks and am now on Sulfameth and Atovaquone-Proguanil. I detox every day. Not sure if it's helpful to list out everything I do.

But I really haven't improved in the 8 months I've been on treatment. My LLMD only does pharmaceuticals.

Just wonder if people just start treating themselves for parasites or talk to their doctors?

Kinda a newbie so I appreciate everyone's wisdom.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 5/8/2016 6:14 PM (GMT -6)   
LLMD's should be looking at whether or not you have Babesia..and treating if you do.

....and some LLMD's will treat you for all three B's to cover all the bases.

Are you asking about Babesia in particular...or other parasites?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4907
   Posted 5/8/2016 7:00 PM (GMT -6)   
Yes babs and helminthic.. i treated with herbs by my self and first llmd did give me some iver and tini...just ordered some csa and art. I ordered some giemsa stain to see if i could see the babs or proto

Laker7491
Regular Member


Date Joined Aug 2015
Total Posts : 262
   Posted 5/9/2016 3:51 PM (GMT -6)   
Girlie, My LLMD is treating me for Babesia based on his clinical assessment. He also sure I have Bartonella.
So right now I'm being for the Babesia. I was just curious if people also used something else to take care of other parasites.

Thanks

miacara5
New Member


Date Joined Mar 2018
Total Posts : 3
   Posted 3/24/2018 1:08 PM (GMT -6)   
It's been a while since this thread was active, but I found it during a web search today on Alinia treatment for Lyme.

Recently both my son and I both showed up positive on some Lyme testing. My doctor said I tested "positive IgM Immunoblot" (is this positive for Lyme?). For my son, he said:

Officially, the results are negative, but he had antibody activity on each of the antigens they tested for (IgM Immunoblot) but the vast majority were "I" or in determinant... too close to call. Not high enough to earn the "+" designation.

I usually see this this when it is not Borrelia burgdorferi one is infected with but another Borrelia group organism, such as in the Relapsing fever group - B mayamoti or any of the twenty or so species that are in the RF group.

It seems like I've had Lyme for over 10 years now, as they suspect that I was a maternal carrier.

I started treatment with Alinia a month or so ago, and had two weeks of feeling terrible, with bad fatigue, etc. then two weeks of feeling great -- better than I have in years. Energy, clarity of mind, positive outlook. Now it's kind of back to before (before treatment). I'm hoping to get back to those two weeks of feeling great somehow.

I wanted to share an Alinia source, since someone on this thread mentioned how crazy expensive it is. My doctor referred me to a pharmacy in India called AllDayChemist.com where you can buy the generic (Nizonide) for just 34 cents a tablet. You have to send your checking account info, but he never had anything untoward happen, and I did this without incident and received the medication about 20 days later, no problem. It's a much less expensive option and just wanted to pass it on.

Does anyone have advice on whether I should start treating my son? Another doctor mentioned I don't "actually" have Lyme disease, but this doctor seems to think that I have.

Any thoughts are appreciated. I'm new to Lyme. Thank you!

swimman
Regular Member


Date Joined Mar 2016
Total Posts : 32
   Posted 3/25/2018 11:07 AM (GMT -6)   
I used an pharmacy in India as well and a 30 days supply was $21 which included the pills and shipping. I also did an e-check where one provides their bank account info. I received the meds quickly - within two weeks as I remember. www.reliablerxpharmacy.com. Unfortunately, I did not see any results from taking Alinia (Nizonide).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 3/25/2018 12:35 PM (GMT -6)   
miacara5 said...
It's been a while since this thread was active, but I found it during a web search today on Alinia treatment for Lyme.

Recently both my son and I both showed up positive on some Lyme testing. My doctor said I tested "positive IgM Immunoblot" (is this positive for Lyme?). For my son, he said:

Officially, the results are negative, but he had antibody activity on each of the antigens they tested for (IgM Immunoblot) but the vast majority were "I" or in determinant... too close to call. Not high enough to earn the "+" designation.

I usually see this this when it is not Borrelia burgdorferi one is infected with but another Borrelia group organism, such as in the Relapsing fever group - B mayamoti or any of the twenty or so species that are in the RF group.

It seems like I've had Lyme for over 10 years now, as they suspect that I was a maternal carrier.

I started treatment with Alinia a month or so ago, and had two weeks of feeling terrible, with bad fatigue, etc. then two weeks of feeling great -- better than I have in years. Energy, clarity of mind, positive outlook. Now it's kind of back to before (before treatment). I'm hoping to get back to those two weeks of feeling great somehow.

I wanted to share an Alinia source, since someone on this thread mentioned how crazy expensive it is. My doctor referred me to a pharmacy in India called AllDayChemist.com where you can buy the generic (Nizonide) for just 34 cents a tablet. You have to send your checking account info, but he never had anything untoward happen, and I did this without incident and received the medication about 20 days later, no problem. It's a much less expensive option and just wanted to pass it on.

Does anyone have advice on whether I should start treating my son? Another doctor mentioned I don't "actually" have Lyme disease, but this doctor seems to think that I have.

Any thoughts are appreciated. I'm new to Lyme. Thank you!


Hi miacara - welcome!

This is an old thread from 2013 (not sure if you realize this) .

ADC is a source that some of the members here do use. Not everyone is comfortable with ordering online from India though.

You were positive...and your son is IND. What's more important : Does your son show symptoms?

It sounds like your Dr isn't a Lyme Literate one?

Alinia isn't usually the starting point when we treat lyme and coinfections.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

miacara5
New Member


Date Joined Mar 2018
Total Posts : 3
   Posted 3/25/2018 3:03 PM (GMT -6)   
Hi Girlie... many thanks for your response!

My son is complicated... he has an 18th chromosome disorder, so has multiple disabilities. He also struggles with inattention, hyperactivity, lack of focus, some ASD symptoms, etc. I'm sure Lyme symptoms might be in there, mixed with everything else.

Well, our doctor is interesting. He is very "lyme literate," in that he has authored papers (his most recent: http://journalijcar.org/sites/default/files/issue-files/0263.pdf) and written a book ("Incurable Me")... Lyme is one of his things, I think. But I think he must take a different approach, given what you've said. He loves Alinia. I'm not sure why he chose to begin with it...

What is the starting point you mention that's usually used?

miacara5
New Member


Date Joined Mar 2018
Total Posts : 3
   Posted 3/25/2018 3:04 PM (GMT -6)   
Also what does IND mean?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 3/25/2018 7:37 PM (GMT -6)   
miacara5 said...
Hi Girlie... many thanks for your response!

My son is complicated... he has an 18th chromosome disorder, so has multiple disabilities. He also struggles with inattention, hyperactivity, lack of focus, some ASD symptoms, etc. I'm sure Lyme symptoms might be in there, mixed with everything else.

Well, our doctor is interesting. He is very "lyme literate," in that he has authored papers (his most recent: http://journalijcar.org/sites/default/files/issue-files/0263.pdf) and written a book ("Incurable Me")... Lyme is one of his things, I think. But I think he must take a different approach, given what you've said. He loves Alinia. I'm not sure why he chose to begin with it...

What is the starting point you mention that's usually used?


Usually LLMD's will do some of the more known lyme antibiotics...like Minocycline, doxycycline, azithromyacin, biaxin, Ceftin or Omnicef....etc.
Then maybe add in an antimalarial - like Mepron/Malarone...Alinia is in that category...but it's not usually the first med llmd's use.
I'm not saying it isn't good...just not commonly used to start treatment.



IND means "something" has shown...but not strong enough to be considered a Positive.
Some people call it a 'weak' positive.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 3/26/2018 8:40 AM (GMT -6)   
Last May I started pulsing Tetra, Alinia, and Diflucan for two weeks ON and two weeks OFF. In July I increased to three weeks OFF, and in Sept tried four weeks OFF but had some back sliding return of some sx. Stayed on three weeks OFF thru winter and recently added Liposomal Oil of Oregano to the pulse. Next week I'll tray again at a fourth week OFF.

Right now I'm at about 90 to 95% healed and staying with this combo for a while longer if all goes well next week. I started Lyme abx treatment in March 2010, and tried almost every tx protocol over the past 8 years including Salt/C and Humble's MMS early in treatment. Also have followed some Buhner and Cowden herbal combos, and other alternative remedies.
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