posted
I started it Thurs. It's an antiviral but supposed to work in combination with Biaxin, which I've been on for over a year. The problem is that I stopped tolerating Plaquinil, which I guess is necessary for Biaxin to do it's thang correctly.
Amantadine is an antiviral, so possibly I might get some benefit from that aspect, too, LLMD says, but that's not why my LLMD chose it.
I've never seen anything (that I remember! Big "if" there!) on the Lyme boards about it, so I thought I'd ask. Especially because today I had a really severe day Sun. and now again today, wh ere I basically can't move or speak. (This used to be how I was most or all of the time.)
I'm hoping this is a herx. Would like to know other's experiences. th anks!
Posts: 223 | From Western Mass. | Registered: Nov 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Just bringing this back up for you. People have mentioned being on it - can't remember much about it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tick battler
Frequent Contributor (1K+ posts)
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posted
Isn't it used for borna disease virus? I think that's the only time I've heard it mentioned.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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bcb1200
Frequent Contributor (1K+ posts)
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posted
Yes...I've been on it with Biaxin with June. Dr. B's guidelines say to use Biaxin or Zith with Plaquenil or Amantadine. My LLMD prefers amantadine since there are no vision issues. You may feel a bit off for 2-3 days but then okay after that.
It is an antiviral,but that is not why it is prescribed. It is prescribed because it does the same thing as Plaquenil....raises cellular PH to drive out the lyme where the Biaxin then kills it.
Love it.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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According to the Rx info from the pharmacy, it's "on-label" use is for a form of the flu.
BCB,
Thank you so much! so helpful.
Yes, I was on plaqunil for a year, but had to go off all my meds for a time, and then when i tried to go back on plaquinil, I couldn't tolerate it, even very los doses.
So far, I'm not having any obvious side effects from this. Hope that continues. Think it's just herxing.
Posts: 223 | From Western Mass. | Registered: Nov 2008
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- How long have you been on it? (It says it sometimes stops working, but that's for the flu, so I don't know what that mens for Lyme.)
- Do you (or anyone else) know if it also affects babs or bart? I have been having babs and bart sx rearing up in last few days, too.
Posts: 223 | From Western Mass. | Registered: Nov 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I've been on it since about June 20. Again...we don't take it for the antiviral effects. It is usually prescribed for the flu or a cold, etc.
We take it to raise cellular PH to make Biaxin or Zith work better.
I do not believe it affects babs or bart, but could be wrong.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Is there anything natural you can take to raise cellular ph and do the same thing?
For some reason, none of my LLMD's seem to ever put me on amantadine or plaquenil. They don't seem to see it as all that important, but I'm wondering if it's one of the reasons I'm not getting well. If Dr. B recommends it, I don't know why they wouldn't be prescribing it.
Posts: 453 | From TX | Registered: Aug 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Don't know. Why not ask for an Amantadine Rx and cite Dr B's guidelines. Amantadine is better than Plaquenil IMHO as there is no vision side effects (or risk of damage.)
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Yeah, plaquinil also gave me bad psych herxes (though several abx do), and it drove my liver enzymes up (although other abx have done that, too).
Just read the warning/patient info on the package (as you should do with all Rx), because my LLMD warned me that Amantadine can cause psych sx as a side-effect, not a herx, and if so, I should get off right away.
Posts: 223 | From Western Mass. | Registered: Nov 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I'd like to ask same question as VB.
Is there a natural alternative to amantadine to raise cellular ph to drive lyme out of the cell?
I was just prescribed amantadine but am nervous about possible psych side effects. If amantadine does cause psych side effects, do they resolve when the amantadine is discontinued?
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Every time I try Amantadine, I get unusual muscle pain in my thighs and upper arms. Searching about it on the internet, I came across a disturbing article about it causing neurological problems, particularly if one has problems with their spleen. In fact, there was an episode on "House" about someone who became very sick on amantadine. Normally, stopping the medication will reverse the neurological issues. I've mentioned this to my LLMD, and she just shrugged it off, thinking I know doubt was just sufferring lyme paranoia. Still . . .
Posts: 43 | From Florida | Registered: Jun 2010
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posted
here's more on "amantadine poisoning" (gosh, you can get really sick from it, or go blind with plaquenil!):All about Amantadine Poisoning
Although the drug amantadine had been around now for several years, no one had heard of it until one of the characters on the TV show, �House,� died of amantadine poisoning in 2008. Suddenly, people were asking one another if they had ever heard of amantadine and if amantadine poisoning was a legitimate cause of death.
In case you are not one of thousands of people who rushed to the internet to look up amantadine, yes, it is a real drug and amantadine poisoning can definitely cause death. It is not inevitable, but if you already have health problems as the woman on the TV show did, death is much more likely. She already had kidney disease. Amantadine is used to treat influenza viruses and is one of the drugs used to treat Parkinson�s disease. Even without taking an overdose, amantadine can have plenty of negative side effects.
Sold under the brand name Symmetrel, manufactured by Endo Pharmaceuticals, amantadine, is used to treat influenza and Parkinson�s disease. Unfortunately, influenza virus A is already resistant to the drug. Whether or not to use amantadine is debatable because of the many side effects and adverse reactions reported from the drug. Many of these have to do with the way it affects the central nervous system and mental conditions.
For instance, all of the following adverse reactions have been reported as a result of amantadine use: insomnia, dizziness, nausea, anxiety, depression, constipation, irritability, anorexia, headache, confusion, ataxia, abnormal dreams and hallucinations, dry mouth, nervousness, diarrhea, peripheral edema, somnolence, fatigue, orthostatic hypotension, dry nose, psychosis, skin rash, hypertension, congestive heart failure, amnesia, decreased libido, hyperkinesia, visual disturbances, optic nerve palsy, suicidal attempts, suicidal ideation, convulsion, sensitivity to light, cardiac arrest, and eczematoid dermatitis, among others.
Amantadine can even cause pathological gambling. Amantadine poisoning is simply an overdose of the drug. One gram of the drug has resulted in death. Suicide attempts after taking the drug have also proved fatal. Overdoses have caused kidney, central nervous system, respiratory and cardiac toxicity. This included such heart problems as hypertension, tachycardia, and arrhythmia.
Treatment of amantadine poisoning requires immediate transport to a hospital emergency room. Symptoms of poisoning are pulmonary edema, respiratory distress and heart arrhythmia. Amantadine overloads both the kidneys and the liver, causing urine retention and life-threatening circumstances for those with kidney or liver disease. Sometimes pumping out the stomach can help, but it depends on the amount of time that has passed since the overdose.
Patients are usually placed on a respirator almost immediately and given intravenous fluids. These types of treatments, along with the drug, physostigmine, may help the patient to recover. Older individuals and those with kidney problems are at greatest risk of death. If the supportive therapies do not work, the patient will eventual develop convulsions, go into a coma, and die. This all happens very fast--there is no �staying in a coma for years� scenario.
Amantadine can have many serious side effects and an overdose can result in death. So, be very careful and ask a lot of questions if your doctor has decided to prescribe amantadine. It can cause severe reactions when combined with certain other medications. Make sure that there is a likelihood that amantadine will significantly improve your life before starting to take this medication.
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Posts: 43 | From Florida | Registered: Jun 2010
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bcb1200
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posted
Again. On since June. No issues. I think Plaquenil is more risky
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was given amantadine by a LLND but did not take it. I was having primarily bart symptoms and she told me it would calm my tremors from lyme, WHICH I had not had for a year. She was new to treating lyme and co -infections and followed a recipe always treating lyme first. Useless.
My memory is so bad I could not recall this until I read these posts. I was relapsing a few months ago and decided to add the amantadine, checking drugs.com for interactions with my other meds, Bactrim DS and zithro.
I got the worst diarrhea I have ever had. As the drug can cause this I quit after a couple of days. Took a break and then tried plaqueni. Same thing happened. I was dizzy with diarrhea.
There was something going around and I don't know if I was sick or having a drug reaction. I am going to a LLMD next Monday so will see what he wants to do.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
FYI y'all, I had to go off it. One of the side effects it caused was drowsiness/napping -- which was a nice change of pace, since I've had insomnia due to various illnesses since 1995.
However, it also caused horrible nightmares, which woke me up and were making me afraid to sleep. So, that caused insomnia.
Then it got worse. I was having nausea and poor appetite, which I thought was related to migraines, and I'd thrown up once. Nausea is not uncommon for me, but poor appetite is VERY unusual and vomiting is pretty unusual.
I didn't connect this to Amantadine, tho, because I thought it was from the migraines.
Then, in 24 hours, I vomited up anything I ate. I'd eat something, take a nap, wake up and immediately have to throw up. Sometimes I had to throw up so fast I couldn't make it to the bathroom. I couldn't even turn on the lights before grabbing my trash can and puking till I had the dry heaves.
At that point, my last dose had been over 12 hours before. I googled amantadine and vomiting and discovered it is a rare side effect, and usually only seen in people over 60 (I'm 40), and 80% of the time those are men (I'm a woman).
So, that was that for me. This drug has been around since 1966!! Might be time to retire it, ha ha. Although I know it works for some (such as bcb, above).
I can't tolerate most of the drugs for Lyme & co, though. However, my most common adverse response is psych stuff, or inability to bring down my liver enzymes, and this didn't do either of those, except the nightmares, which is a CNS thing. But the vomiting was awful.
So, I am waiting for my next appt with my LLMD to see if there is anything left to try besides plaq or amant. Laura J's question is a good one -- I'd love to know if such a thing exists.
Posts: 223 | From Western Mass. | Registered: Nov 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
Googled natural ways to raise cellular Ph and found this product.
So what I realized that raising cellular Ph means alkalizing. Awhile back I was trying to figure out some of my symptoms like hands clawing up and feeling like I was getting electric shocks in my arms. I was brought to ER once for this and was told it was b/c I was hyperventilating. What they didn't understand is that what I was experiencing was causing me to hyperventilate b/c it made me panic, not the other way around. The hyperventilating didn't come first and cause the symptoms but the symptoms caused me to panic and hyperventilate. Anyway, I'll see if I can remember this right but I looked it up and hyperventilation can cause alkalosis leading to these symptoms. I came to the conclusion that there is an imbalance in my body leading to alkalosis without hyperventilating and I think it is an electrolyte imbalance due to the hypovolemia and dehydration I experience from POTS syndrome.
So what i'm getting at is if I'm right about those symptoms being caused by alkalosis, would it be a good idea to raise my cellular Ph/alkalize? And, if that's the only way I can get better is by alkalizing to get Lyme out of my cells and I can't do that b/c it pretty much puts me into shock then does that mean I'll never get better?
Posts: 2541 | From Northeast | Registered: Jan 2008
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