posted
Haven't posted in awhile. Thought I'd share my latest experience. I've been treating for over three years now. I felt at about the year-and-a-half point that I was making progress and on a good day felt like about 75%. Well, that feeling was short-lived.
As I continued to treat, with meds like Malarone and others, I apparently stirred up a hornets' nest, and the herxing really kicked my butt. But nothing compared to what happened two months ago when I added Alinia to my arsenal. Alinia apparently treats bacteria, parasites, and even has antiviral activity,
After 3 weeks of taking Alinia only 3 days/wk (was also on zith, ceftin, and LDN), I became so crippled with pain that I asked my LLMD for a morphine patch. Excruciating pain deep in my hip sockets, shoulder sockets, knees, one knee started to swell, neck very stiff, could barely walk or go up stairs. Major neuropathic pain in one leg alternating with numbness.
Doc told me to stop everything for a week which I did. Symptoms subsided. Then restarted everything, taking Alinia every day but at half dose. Within a couple weeks major herxing again, but this time I had major neuropathy in my left arm with whole arm going numb alternating with excruciating neuropathic pain. Then the skin on the soles of my feet started peeling off, as well as on some of my fingertips. Very bizarre. A lymenet member alerted me to the possibility
of Stevens-Johnson syndrome, and I believe this is what I had. I've had this before, even with necrotic lesions which at the time I thought were frostbite.
I have now stopped all Lyme meds for a week, I was also suffering from a cold, and we had a major storm up here with no power/heat for a week. Miserable is an understatement.
Herx symptoms subsided again except for residual numbness in fingertips of left hand. I plan to restart everything tomorrow.
I really feel that this may be my last major herx. It was so extreme I felt it was really killing bugs bigtime. I am feeling hopeful that 2012 will be the year that I stop treatment, at least for awhile.
Wondering if anyone else has had similar or other experiences with Alinia.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
^^
Posts: 269 | From VA | Registered: Jun 2005
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My sister who is chronic, said it mentally put her in a place from hell. She got off after a month.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
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It made me sicker than anything else I have ever been on. This all just happened to me this week. Within 1 1/2 days of starting, I had diahrea and vomiting. Stopped the meds. Was totally non-functioning. Couldn't even watch TV. Only lay in bed, leaning over to wretch. My husband put me in a tub of Epsom Salts to help me detox. He had to hold a bag outside the tub so I could vomit. After 2 days of no food, and not being able to hold down even small sips of water, I was completely dehydrated and totally out of it. Went to my local Lyme doc who gave me an injection for nausea (Tygan sp?), and a saline IV to help replace some fluids. This finally helped me to start turning the corner.
Unfortunately, this episode also restarted my super sensitivity to sulphur (I've had this in varying degrees for the last few months). So now I have been reacting MAJORLY to anything with sulphur in it. I can't take a lot of supps, and even have to avoid foods containing sulphur (which is a lot). Can't even take Epsom Salts bath (Magnesium Sulfate). The bath made me feel worse! My skin itched and burned on top of everything else. Skin felt much better when my husband put me in a Himalayan salt bath the next day (my doc suggested this).
Starting to feel better, but I am still not myself. Will be speaking with one of my Seattle docs next week to figure out next steps on how to tackle the parasites.
My advice for anyone wanting to try Alinia is to start out SLOWLY, then ramp up. I'm going to remember this rule with any pharmaceuticals I try. There's no downside to doing that, as far as I can see.
Hang in there. Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I'm interested in hearing people's reactions to Alinia.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
daughter has been on it for 2 months. Seems to be tolerating it well, but it is difficult to determine what is causing what with so many medications. We did start slowly, adding one at a time and slowly ramping up.
Posts: 312 | From Utah | Registered: Nov 2010
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posted
Hubby never had any real problems with Alinia. He took it at half dose for 4 months and then at full dose for 4 more months.
His LLMD said that alinia is actually flagyl plus one more ingredient -- so that could explain the neuropathy as that is a well known side effect of flagyl.
Hubby had major issues with IV flagyl -- fever after every dose. But now 6 months or so later he has started oral flagyl. Is at half dose and can tell it is trying to work on babs along with everything else he is taking.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Yes, I had my worst herx ever with Alinia. I took it as part of Dr. K's parasite protocol, and the Alinia was the last med in my 5 week long treatment. I took it for 2 weeks every day.
As part of my symptom picture overall I have seizures frequently, and during strong herxes these get more severe -- in frequency, length and intensity.
On day 9 of the Alinia I began having stronger/longer seizures -- these were not good, but within the range of something I could handle.
But, things became very severe at the end of the 2 weeks, actually just after I stopped taking the Alinia. I had constant, non-stop seizures all day long (average of 9 hours) that could only be stopped by going to my local doctor to get an IV.
The following day the seizures would return until I could get an IV again. That level lasted a week, but in the 2nd week I was still getting more intense/lengthy seizures. It took a couple weeks to begin to stabilize.
Initially we thought this was a big parasite die-off. That may have been some of it, but after visiting my doctor it became clear that this was actually a Babesia die-off in my brain.
I had been on babesia medication for about 10 months at that point, and most of those babesia symptoms had vastly improved or even disappeared. So, I thought that babesia was ok on some level for me.
HOwever, Alinia a babesia medication that is able to cross the blood brain barrier, and apparently that is where my babesia were all hanging out.
My doc wants me to try Alinia again at some point -- maybe in 6 months or so -- but for now I'm still calming my system from all that.
So, yes...Alinia can have very strong reactions for some people. Please take it slowly, and do all you can to detox if you will be taking it again, and know that it has such an effect for you.
LOTS of detox.
Posts: 232 | From Oregon | Registered: May 2010
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posted
Hi, I also took alinia with the most extreme herxheimer reaction during the course of my treatment. Now mind you this was in the beginning so my germ load was very high. I took alinia with the intent on getting the parasite I had. Unbeknownst to me or my doc, it was killing off babesia and probably lyme as well.Talk about a herx!!!! I called it the herx from hell also,i actually wrote in my journal HERX FROM HELL last Sept. 19th 2010. I'll NEVER forget how hard that week and the worst day was. Go slow with this drug,I think it kills alot more stuff than just parasites Doing quite well these days, coming down the home stretch..
Posts: 342 | From northern california | Registered: Dec 2010
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Day four after resuming the Alinia and abx (took a week off). Yesterday was not bad, but this morning I woke up with excruciating pain everywhere. Not so much neuropathic pain this time, just joint pain everywhere. Can barely walk upstairs. Almost need a walker to get out of a chair. Unfreeeekinbelievable.
LymeAware: So you were on it for just two weeks?
Norcal: How long were you on the Alinia, and did the Alinia herxes ever subside? Or only after you stopped the drug?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
Bea: Interesting about Alinia containing Flagyl. Do you know what the other ingredient is? I have not taken Flagyl during my three years of treatment.
Am I right that Alinia hits everything?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
Hi Paulie -- Yes, I was just on it for 2 weeks.
My doc said that most people begin to feel the herx around day 3 or 4 (which sounds like what you are experiencing now! ). For me it didn't start until day 9, but got severe at the end of the 2 weeks.
I'm sorry to hear that you are in such pain! -- I know how challenging and hard those times are! Please do all you can to detox and support yourself during this time. You are certainly getting at something, but these reactions should be taken seriously too.
Posts: 232 | From Oregon | Registered: May 2010
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). For me it didn't start until day 9, but got severe at the end of the 2 weeks.
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