posted
I know there is quite a bit about Lyrica in the archives but none that specifically answer the questions I have. I am seeing my internist tomorrow to ask for a permanent prescription for Lyrica.
Facing reality, it looks like I'm not going to be able to beat Lyme and the co-infections I have (Bart and Bab both) plus other related illnesses. I was infected (probably) 15 years ago but (finally) got diagnosed just three years ago.
Since then I have been treated by two very good LLMD's in Kansas City with drugs at $5K/month (after insurance) plus periodic other treatments (i.e. nine weeks of IV Ceftin at $30K) for three years now. But tests show I keep getting worse.
I am on pain meds that would put a horse into a coma (my doctor says). I have to take such high levels as I've become very resistant to them over the years. I was first put on hydrocodone in 1995 with the doctors having no clue what my illness was.
But I finally found a doctor who accepted my pain was real and extreme AND was willing to treat pain with narcotics (I've been through many pain clinic silliness programs where you talk about your pain in a group and hum in unison while sitting on the floor - how stupid).
I will be tested again this fall. If I am still getting worse (my CD57 is now 30) I plan to stop all Lyme meds and just take pain meds. I'm told my immune system is down to 10% and rapidly headed to zero so I'm not willing to go through years of wheel chair and hospice care.
I have been on hydrocodone/liquid oxycodone and valium for the all over body pain. It makes it bearable - for now.
But I also have extreme sharp shooting pains like being stabbed with a knife with the movement of any joint. So I have been reduced to sitting in a chair vegetating 16 hours a day and sleeping one hour at a time.
The first thought (not serious) of suicide finally hit me. It scared me into taking Lyrica I had but had never taken. The stated side effects had me too scared to take it. ZERO side effects. Within four hours ZERO stabbing pains! LYRICA IS A MIRACLE DRUG!!!!
Here are my questions directed to those who have been on Lyrica for a long time. 1. Is it as addictive as I've read? I probably don't care since I'll be on it as long as it works but I would like to know if the addiction is "worse than crack cocaine" as I've read. 2. Has anyone become resistant to Lyrica as I have to the pain meds I take? If so, how long did it take to become resistant? 3. Does Lyrica not mix with any other drug? I take 81 meds a day and no side effects but just asking. 4. Any other advice? Anything better than Lyrica? I was prescribed Cymbalta but the side effects of it REALLY scared me.
Thanks in advance for any comments!! All the best, Gary in Kansas
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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posted
I don't have answers to your questions. My daughter tried Lyrica and had a side effect that was intolerable--I can't remember what it was, because we have tried so many things also.
She did better on Cymbalta, but she had drug induced hepatitis on it (and other drugs) and the doctor won't try it again.
I had a couple of other suggestions for you. My daughter has had a long treatment and can take a boat load of meds and still hurt and not sleep.
I asked the doctor to test her vitamin D levels and was shocked that they were so low. Since we have been supplementing her with vitamin D she has been responding to treatment better and sleeping better. Vitamin D is an immune stimulator among other things.
She sees 3 doctors for various things and they are so impressed with her current progress. At first she herxed when I tried to give her a pill a day, so I started with a couple a week and now I give her 1 every other day. If she ever starts getting in the sun more, I will stop the pills.
The other thing that helps is zanaflex. She had tried a couple of other muscle relaxers, but zanaflex works the best for her.
You may already have tested your vitamin D and you may take muscle relaxers, but these have really helped my daughter and we have been treating her for 6 years.
If Lyrica helps you as much as you say, go for it. Face getting off of it when you get well. Just my opinion.
Posts: 177 | From God's Grace | Registered: Apr 2007
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posted
i take lyrica, just started taking it a couple months ago. I first tried it last year at 75mg you sound like me, sick for 20 years, tremendous amount of pain. i have had a good response to abx, but not completely better
and got dystonia in my hand. this time, i was started on 25 mg ans slowly build up. i am up to 100mg twice a day.
it truly is a wonder drug. it helps the all over burning, stabbing pains. i believe it is nerve pain that it is helping
i am also on amrix which is a long acting muscle relaxer which i just started and it is helping a bit.
my mainstay in pain control has been extended release morphine and vicodin for breakthrough.
i really dont have any bad side effects from the lyrica. my liver functions are slightly elevated, but not sure if its the lyrica or the artemesinin.
i would suggest starting slow to avoid side effects. one thing i noticed is a big reduction in pain everytime i up the dose. hopefully this will level off and not from building tolerance.
dont worry about addiction right now. just get well and take anything that will keep you from suicide and depression.
Posts: 615 | From maryland | Registered: Oct 2007
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1. Lyrica is not at all addictive for me. I can stop and start as needed.
2. I have not become resistant to it.
3. YES. I have to be very careful taking Lyrica with other meds, particularly opiates, but also benzodiazapenes. I try to avoid doing this because it really whacks me out.
Hope that helps!
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
1. Is it as addictive as I've read? I probably don't care since I'll be on it as long as it works but I would like to know if the addiction is "worse than crack cocaine" as I've read.
My mother takes it, and has taken it for a few years now, for Lyme pain. She said she tried once to go off of it, to see if her pain was still there. It was there, all right, in spades. So I don't think it was so much addictice as it was effective.
2. Has anyone become resistant to Lyrica as I have to the pain meds I take? If so, how long did it take to become resistant?
I don't believe my mom has had to up her dose.
3. Does Lyrica not mix with any other drug? I take 81 meds a day and no side effects but just asking.
Check with your pharmacist -- a phone call will do. They have programs to check for side effects and cross-reactivity. Or read the patient product information HERE .
Hope that helps, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I am so sorry about your pain, I can so relate...really.
Lyrica for me only made me tired and emotionally unhinged..BUT I do take a low dose at bedtime and it seems to help me sleep.
I have not read about it being addictive. I have read it is the "newer improved" version of Neurontin which is not addictive, but when stopping still needs to be weaned down.
I hope you don't give up on abx entirely...how about Bicillin injections? Have you tried them? I swear they can actually lower my pain (my LLMD says because they are a beta lactam abx) temporarily) I do low doses because the pain increase of all abx is too much for me, my pain is bad enough without herxing hard. I have to do low doses or I will go into pain so severe I am nearly catatonic, the pain gets to be INSANE! Bicillin/biaxin can kill cell wall deficient, L-form and Bartonella if used long enough. My bart is gone because I stayed on Biaxin nearly 2 years.
I wish you the best..keep trying..do IM...do orals...being sick so long it could take years to notice a difference. CD57 most LLMD's say is garbage...I hate that damn test. Mine shot up to 150 once and I NEVER felt worse! I feel best around 50-60. I think others would advise the same, to forget relying on this test.
How do they know your immune system is near nothing? There are MANY parts to the immune system. Have you done immunosuppressants, like cortisone? (I DID! & that really destroyed me) but the body can repair itself...everything can be repaired. I wouldn't believe everything I am told even by my doctors...keep going if you can ...improvement takes time, I am an expert at going nowhere and keep trying anyway!
posted
Hubby takes low dose Lyrica -- 25 mg every 8 hours. He does not have a pain problem but takes it for muscle rigors/myoclonus and seizure-like episodes. Has been on the med for only 4 months.
It is my understanding that Lyrica works as a calcium channel blocker to the brain instead of for the heart. Have never read anything that says Lyrica is addictive.
Gary -- I am sorry you are having so many problems. What you have experienced in my opinion is what is true for many Lyme patients -- the extremely high doses of meds do not work.
Hubby has had to go slow mainly because of finances and also because of intolerable side-effects. What IV meds we did we mostly did at home and I slowly ramped up the doses and he did not always get to the therapeutic doses.
Even last summer the hospital doc agreed to try lower doses than normal of IV meds after some bad experiences with so-called therapeutic doses.
Hubby's new LLMD is tryig a new approach which seems to be working for him. He is pulsing low doses of 5 different antibiotics to treat Lyme, Babesia and Bartonella all at once. We started with one med and added things one at a time.
I usually make one adjustment to meds every 2 weeks. We have been on this program for 5 months now and are really happy with the progress so far. Hubby has been disabled for 7 years and in treatment for about 5 years.
Hubby also takes some of the herbs from the Healing Lyme book and the LLMD has an herbalist in his office who also has a nutrition degree.
I do think your body needs a break from the meds but there are other options to consider.
Hubby still takes Ativan with the Lyrica. Has not tried to stop that med yet. Will probably try this in a few months when his nervous system is more stable.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks to all! Everyone on Lymenet are FINE and WONDERFUL people. I couldn't get along without you!
I've been on Lyrica for three weeks now and no side effects. The total STOP of sharp pains only lasted a few days. But it is still 90%. That's OK. So I'll stay on it. The addiction info I had was four years old. Turns out it is addictive but less than the pain killers I take. Really odd that Lyrica works on sharp knife like joint pain while I need opiates (hydrocodone, oxycodone and diazapem-Valium) to knock the all over body aches and pains down to where I can live with them and lead a halfway normal life. I take a huge amount of opiates only because I have become resistant to them after taking them for 15 years (seven years for a broken back with pinches nerves that took five neurosurgeons until one FINALLY found the problem and put substituted titanium for several discs. I do NOT like to take opiates but I'd be dead in 24 hours without them. Sorry, just telling it like it is. I had Lyme toooo long before I was diagnosed and treatment started that I not only acquired major Lyme but all co-infections and illnesses. Bartonella, babesia WA-1 and so on.
You name it - I have it. And it all hurts like hell! Thank HEAVENS I have an internist who is close to my LLMD and KNOWS my level of pain and that I need what I need. Most people like me would be long ago dead. Will I recover? My LLMD says he NEVER gives up on a patient but I am the only patient he has ever had out of thousands who have all these co-infections, etc. all at once.
I'm stubborn as Hell too. 99% of people in my spot would have given up long ago. As long as I have a world-class LLMD and an internist who is willing to prescribe whatever it takes to keep me sane I will keep taking all the pills and shots and treatments. I'd like to think I've helped some people by things I've discovered (see www.yantis.us/detox.htm). I've heard from HUNDREDS of people who say my detox write-up has given them their life back. I am NOT a doctor and do NOT give medical advice but if I've helped even one other person suffering from Lyme and/or X,Y and Z then that makes me soooo happy!
Yes, I have tried bicillin and baxcillin (sp?) shots. I was told they were for beta strep. It stopped the sore throat I've had for ten years! Dozens of doctors would say "hmm, you don't have the signs of the flu or strep but your throat is bright red and you can't hardly talk. I'll give you two weeks of Zithromax". That would fix things for about three weeks. A doctor finally actually finally gave me an unlimited refills prescription for Zithromax (I didn't think that was legal!). Anyway, 12 weeks of heavy duty bicillin shots I think finally did the job.
Anyway, I've learned a lot about Lyrica the last three weeks. I also learned a lot from all of you. Thanks! NO affects with the 81 other pills I take. NOTHING! So all is well. I've never had an adverse drug reaction so maybe I'm lucky in that regard. A cast iron stomach.
Recently my LLMD added Mepron and told to take my Zithromax at the same time. He also prescribed Mycobutin. Serious meds for Lyme, Bab and Bart. And I'm still taking a bajillion meds to build up my immune system. I have ten times the energy compared to a year ago. A year ago I'd crawl from my bed to the bathroom. Now I can do the husband shopping bit with my wife at the local mall for hours and not have to go to the ER!
Where am I headed? I hope I get this suppressed BUT I believe I will end up like the many AIDS patients today who have AIDS suppressed and are leading a normal life. Magic Johnson. They just have to take three pounds of pills and liquids adding up to what's called an "AIDS cocktail" a few times a day. They live a normal life and die from cancer or a heart attack at age 85.
That's me. Except it will be Lyme and Lyme co-infections. I'm probably one of the first who will enter this new group of Lyme patients who can't be cured but, with their "Lyme cocktail" live out an almost normal life.
Sorry this was so long but I hope those of you who read it all found it of interest. No matter how bad off you are, you CAN get your body ALMOST back to normal. BUT you HAVE to find those rare doctors. I hope none of you find that impossible. With the Lyme CDC/LDA/FDA/insurance cops stalking LLMD's, finding such doctors can be impossible in some areas of the country. I contribute $$ to every doctor's defense fund that comes along.
But you need to keep looking so your thoughts change from suicide to waiting for your next grandchild to come along all the while enjoying your family and your newest granddaughter (she turns one year old August 10th and a year ago I had made it to see her face before I would be gone but now I hope to see her married and great grandchildren running around!). It will happen as long as my LLMD and internist don't get shut down by the "evil ones". Yes, evil! Pure evil. I'm sorry, but for every Lyme sufferer suicide they have blood on their hands. As you've read, I don't mince words.
Thanks to all! And good luck with your lives and your own medical battles.
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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posted
Have you had the 5 part HLA gene test that Dr. Schaller talks about in an article on his web page? It is done by Lab Corp. You can also email Betterhealthguy.com, he is amazing with his knowledge about all of this.
Or send Luvs2ride a PM and talk to her about not being able to take antibiotics. My daughter can't take them either.
She has had LYme since 1991. Was diagnosed in 2005, she has everything, co infections plus all the common virus infections.
Antibiotics, HBOT you name it have only made her worse. She is TOXIC. We are doing only detox at this time working with a NP in Seattle that is a great help.
If you have this HLA gene all the antibiotics and anything you take to kill will not help unless you do very high detox along with the killing.
All her detox pathways out of her body were blocked. Many people have this, their bodies just can't detox the die off or the side effects from the meds.
She takes 75mg of Lyrica 3x's a day, it seems to help with her tremmors and some of the stabbing pain. She has tried to ramp down but when she does the tremmors get worse, so it does help with that.
Just a thought............ Good Luck,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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posted
Message to momfromtexas. I have important information to send you but your box is FULL. Either empty it or e-mail me and I will e-mail you. My e-mail is [email protected]
Take care, Gary in Kansas
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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posted
ICEam and PAT1 -- thanks - this is all new info to me. I have no trouble with antibiotics except I have taken them for so many years that I think I am resistant to them (I suspect they do nothing). I realy detoxed my body quickly discovering Wilson's Syndrome www.yantis.us/detox.htm Alkalive pH Stix will measure your body's toxicity. Very important to do. The change was amazing. I will check out the Web sites you both listed. Thanks much!!
Gary in Kansas
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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