posted
Sorry in advance, this is kind of a long post...
After years of trying the "typical" chronic Lyme treatments (everything from herbs to IV Rocephin), I find myself pretty much back where I started five years ago.
I did have a bit of improvement three years ago--energy up to 45%, cognition up to 80%--but that is long gone. Most disappointing is that my cognitive/neuro symptoms are reappearing.
All this is to say that now I'm in my doctor's "experimental" group--the few patients who simply do not/have not responded to a dozen or more forms of treatment.
Now he has prescribed Alinia. It is an antiparasitic, but he says it may also have antibiotic properties. At the ILADS conference in November, he spoke with another doc who had good luck with this.
I am currently taking Alinia and Biaxin (plus other things like Nystatin, pain meds, Cymbalta for severe depression and pain, etc.).
I herx'ed hardcore immediately, which I suppose is a good sign.
Unfortunately, Alinia is still under patent in the US and costs about $1500/month. I paid up the first month, but...
well, it would be great to find this cheaper. I have seen numerous overseas sites selling MUCH cheaper forms of Nitazoxanide, the generic name for Alinia.
However, I know that sometimes some drug companies will sell a drug at a reduced cost, but the drug is, say, only 75% as strong as it is claimed to be. (Worst case senario is that you get just a fake that does nothing.) I think this was the case when I purchased Bicillin from Spain.
Does anyone out there know of a good company selling the 100% real thing for less than $1500? I don't care if it's still a lot of money (say, $700), but any savings might help.
Thanks, AnnaL
Dx: Just Lyme (no co-infections) and Depression
[ 12-31-2012, 09:36 AM: Message edited by: AnnaL ]
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
I think you need to call around. Mine was only 200-300 hundred dollars.
It really does pay to shop around and compare apples to apples.
Alinia knocked me down so much I only took about three and quit.
I do not mind having herxes, but need to be able to funtion.
Posts: 620 | From Ks | Registered: Oct 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I wish I could tell you where to get it cheap, but Cozy's right, try shopping around. I did this for my cat on something, and my compounding pharmacy gave me a break (they have my business). Ivermectin works similar to Alinia on me and it's less expensive.
I think one of the key elements here is that Alinia is used for parasite treatment. Every lyme specialist I've seen missed the boat on parasites. I started to improve once I started treating them on my own last summer. I really think they are the missing link.
-------------------- --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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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Try Mark's Pharmacy, Vancouver, B.C.
Alinia crosses the blood brain barrier as does Albendazole. Ivermectin does not.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
AnnaL...do you have insurance? If so check to see if your insurance has a mail order pharmacy. My last LLMD made me aware that if you go through the insurance companies mail order program the meds can be MUCH cheaper.
Just as an example...there was one med that was going to cost me over $500 per month after my co-pay BUT when I went through the mail order program it only cost me $90 and that was for THREE months worth rather than one.
That seems to be the usual amount for them on the expensive drugs. $90 for three months worth. So I have been doing that to get all of my expensive meds.
I am grateful to be able to afford them that way BUT it makes me SOOO furious because it just proves how much they are ripping people off. If they can afford to sell the meds for $30 a month they why are they charging over $500. UGH!!!!
Anyhow...just wanted to throw this out there for those that aren't aware of insurance companies mail order programs.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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ktkdommer
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posted
Have you tried Costco?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Anna go to Pharmacychecker and look for the different prices. I was able to get Alinia through a Canadian pharmacy for MUCH cheaper.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Thanks everyone. I do have insurance, but they won't cover Alinia as it is "experimental" with regard to Lyme. No surprise there, since they didn't cover my IV Rocephin either.
Costco was right around the $1500 mark. I think there was a $30 difference in pricing when I called places like Costco, Target, and Walgreens. Since Walgreens is 3 minutes away and Costco is 40, I paid a bit extra to save myself the traffic.
Thanks for the recommendation for Mark's Pharmacy. I'll check it out, along with Pharmacychecker.
But if anyone else has specific names of places they got "the real deal," please pass it along, either here or through a PM.
Thanks!
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by AnnaL: I do have insurance, but they won't cover Alinia as it is "experimental" with regard to Lyme.
Maybe you should take it for parasites instead? Posts: 1927 | From se usa | Registered: Mar 2010
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posted
You know, my insurance carrier changes on January 1, so maybe this could work, if they didn't know that the previous company had rejected the claim.
And who knows, maybe the new carrier will pay for it as an experimental Lyme treatment. (LOL)
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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6 - 500 mg. tabs for $16.00 14 day supply would be about $150.00
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Anna, have you treated parasites? Perhaps this is the missing link for you?
Posts: 3528 | From US | Registered: Apr 2007
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CD57 - I'm not sure if I've been treated for parasites or not. That sounds really pathetic, but right now I just can't remember. If I was, it was with an herbal treatment tossed on top of the "main" Lyme treatment.
I think for various reasons parasites were never suspected in my case, though I couldn't now give you a good reason for that.
Hopefully this is what will push me forward!
And abby-do, I'll check out that pharmacy, it looks so much cheaper than what I've paid in the US!
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
It would be nice if your LLMD could write the prescription so that it is to treat parasites rather than Lyme. Then maybe you can get some insurance coverage. Is there any chance your doc would do that?
Hopefully your new insurance company will cover it for you either way.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
There's a decent chance my doc will write it that way. Or if not, I'm seeing a naturopath (not for Lyme, just general check up) in a week or so who would probably help me out.
We'll see how it goes!
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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