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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone have experience with Narcotics to help with your Lyme Symptoms ?

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Author Topic: Anyone have experience with Narcotics to help with your Lyme Symptoms ?
lymetwister
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I saw my LLMD today and I have a Rx for Percocet to take as needed 3 x per day.

My father is very concerned as he is scared I will get addicted.

I don't care about addiction right now and I have found that Percocets help my CNS and calms down my brain symptoms so that I can at least tolerate them if you want to call it that because tolerate is really not the right word because I am still in agony. I guess, it just takes a little bit of the edge off of everything.

If I get addicted or build tolerance, I will deal with this when and if I ever get well.

Appreciate up front anyone who might be on pain medications and how they have helped you.

Gary

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sparkle7
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I posted about this alot here in the past.

Most ideas about addiction come out of the "Just Say No" era. If I get a chance, I'll look up the studies for you about it.

In a nutshell - it's barbaric to let people go around suffering in chronic pain when there are pain meds. Addiction is extremely small in people who have chronic pain.

Crushing up a bunch of oxycontin & snorting it when you are physically well just to get a buzz is different than suffering with an illness & being in intolerable pain.

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Keebler
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-
Percocet (Oxycodone and Acetaminophen) is absolutely toxic to the vestibular and cochlear system. Even independent of one another, each ingredient in percocet is ototoxic. Together, they are even more ototoxic.

It can cause deafness and/or a variety of other balance issues, vertigo, nausea, tinnitus and hyperacusis. When the balance center of the inner ear (vestibular system) is damaged, everything is more difficult: reading, walking, thinking, keep mood stable, etc.

Vestibular damage is most often irreversible.

Addiction is just one concern. It's toxicity that also rides tandem. Toxicity can create hell, literally hell for those who can't tolerate or metabolize certain drugs. And some drugs are not really safe for anyone.

There is no need to suffer, but there are also many more gentle methods that can work. When stronger drugs are needed, all efforts to avoid toxicity should be employed - or at least minimize it.

Have you used optimum doses of magnesium, turmeric, corydalis, etc.? Does a gluten-free diet help? It often does, at least to tame things down a few notches.

It is a good idea to first check any med with the ototoxic list and also the porphyria lists. It takes time to do that.

================

http://www.hearinglosshelp.com/articles.htm#ototoxic_drugs

Drugs That Can Damage Your Ears (Ototoxic Drugs)

=================

Lyme patients often have problems with the Cytochrome P-450 liver detox pathway and when they do, excess porphyrins can cause problems of all kinds.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA thread (Including KPU/HPU and links from Dr. K and others).
-

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jennyflyer
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I can't take them. I've tried several and have the same reaction to each: increased heart rate, dizziness, nausea.

But if you can handle it, why not get some relief instead of suffering daily.

--------------------
Jennifer

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lymetwister
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I was on pain meds for weeks after I had my ACL repair on my knee. The pain meds helped me through the recovery and rehab from that surgery. Why should Lyme be different ?

I can hear great today and never had ear problems.

Magnesium wouldn't touch the pain I'm having inside my head.

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laurisabelle222
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You can always try it and if u have problems talk to the doc and work on dosage or try something else..
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Marnie
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http://en.wikipedia.org/wiki/Opioid-induced_hyperalgesia


Another possibility:

http://www.avigen.com/av411.php

Note:

Use for Chronic neuropathic pain

AV411 has been found to

suppress the production of pro-inflammatory cytokines (IL-1, TNF- α , IL-6).

So does EPA (OmegaBrite). High doses are needed. Spaced out?

Also google: ibudilast

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psr1
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I used Neurontin in combination with Elavil. Also Magnesium, Benfotiamine, Turmeric, and raw cabbage (yup it really helped.)
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littlebit27
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I am on a host of pain medicines because of the pain. It is the only way I can still continue to work and take care of my kids.

So far I haven't had any adverse reactions. I know I won't get addicted because of my life, I wouldn't risk my life for a prescription.

If I didn't have the narcotic and non narcotic pain relievers I don't know what I would do. I'm not sure I would be able to move.

--------------------
*Brittany Lyme Aware on FB*
http://littlebithaslyme.wordpress.com/

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Lymetoo
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I would take as few as possible.

--------------------
--Lymetutu--
Opinions, not medical advice!

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garunner
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I take tramadol on a semi-regular basis and have taken percocet, lortab, etc. as well. I find life much more enjoyable when not in constant pain, and I am a much nicer person!

i take Lyrica and magnesium, but they don't do the trick for pain.

--------------------
IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements.

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EscapeFromLymeland
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It is naive to think that everyone who has a problem with CNS drugs is an 'addict'. There are many people who felt they needed pain relief and went to doctors who could not 'Just Say No'.

One BIG problem is tolerance and the majority of doctors do not seem to realize that until it bites (pun intended) them close to home.

The doctors that keep giving their patients more and more CNS drugs to cover up symptoms are not doing you any favors in the long run.

How will you know if your Lyme symptoms get better, if you are on drugs that cause the same EXACT symptoms?

Maybe your other drugs are causing the pain symptoms?

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dmc
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Just a reminder pain meds when you are in pain help but be wary of the "rebound" effect.

When the pain med wears off you may expercience a perception of worse pain.

A pain-specialist neurologist also said the nerves become much more enhanced (sensitive) to pain...that is why it may requires higher & higher doses to get the same relief.

I think that's one reason why people can get addicted.

I use Vicoden when I'm in extreme pain. That hasn't been for a few months.

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sparkle7
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re: How will you know if your Lyme symptoms get better, if you are on drugs that cause the same EXACT symptoms?

-

It's the abx that have the same "side effects" as Lyme & company symptoms... not the pain meds.

If you wake up one morning & you are not in pain anymore - maybe that's a sign that you are getting better.

Until that day, it's good to know there is something out there that will make my day livable & I'll actually be able to get out of bed.

Usually, the doctors prescribe anti-depressants to get you out of their office - not pain meds.

If you think there may be a problem with addiction or tolerance - you can go to a clinic that specializes in handling pain. I noticed on the internet that they are around & they don't charge alot (in my area, at least).

Many doctors do not know how to handle chronic pain.

It's good to try the natural alternatives but after a while - pain can really wear you down. I take very small doses when I have to. That way, I haven't built up a tolerance.

Everyone is different, though. Some people go on 3 day "trips" if they take a Vicodin.

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EscapeFromLymeland
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The rebound effect is not just for pain medications - antidepressants, antianxiety (benzopdiazepines), antipsychotics, atypicals - they all have a rebound effect. This includes Lyrica, Neurontin and all the other CNS drugs.
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springshowers
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I stay off all that have Tylenol in them.

I have been on MSContin for years and this year on a new sustained release Morphine called Embeda

Some of us have a lot more pain than others and mine is severe.

It is usually last to go when other symptoms starting feeling better.

I hope to decrease and or go off of them but I have needed them to be able to walk or do anything at all for the last decade.

I am not addicted or feel or act in such a manner.

When you are on the right dose the meds go to the pain and then any left over will make you feel loopy etc.

DO not take too much and find that balance with your doctor. That is what I think the key is.

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EscapeFromLymeland
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I do not understand your statement "It's the abx that have the same side effects as Lyme & company symptoms -not the pain meds".

What I am saying is that just because someone takes enough opiates or other CNS drugs to cover up their pain, anxiety, etc., does not mean they are getting better.

The drugs such as Lyrica and Neurontin for example can cause what people here are calling 'depersonalization' and 'derealization'. I believe they are misusing those words, but that is besides the point.

The point is the drugs that we think are helping can in many ways be causing the problems.

If you are still sick and still taking a bunch of drugs, and not getting better - do something different.

I keep seeing patients here on multiple combinations of CNS drugs - it is very disturbing to see this happening to people.

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EscapeFromLymeland
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Spring - Fast forward yourself five years from now - just pretend. Humor me, please.

Pretend that all you do to change your approach to your Lyme treatment is to stop all treatment.

Pretend that once you mostly recover from withdrawal that all your symptoms that were attributed to Lyme were gone.

Pretend that you now know that all the symptoms you have been complaining about were caused by the very drugs, herbs and 'care' prescribed by your LLMD.

Now - What would that 'future' you say to the 'present' you to get you to stop the drugs and reassess your situation from a 'clean' perspective?

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EscapeFromLymeland
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I suggest the same for LaurisaBelle.
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riverspirit
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Dear Lymetwister,

I've been a lay herbalist for many years. I tried everything under the sun to control the pain, and nothing touched it. (Including corydalis, scullcap, wood betony, etc. etc.)

About five years ago i went to my doctor in tears. I felt so ashamed to ask for meds, as i had an idea that i could only use natural substances.

After trying a few things, it turned out that i could sort of handle small amounts of percocet. I took about a quarter of a pill at a time. Yes, i developed a tolerance, so i take a half with breakfast and then several hours later, a quarter. Then after dinner another quarter.

I never take more than one and a half pills in a day total. If i take more than that, the side effects hit me uncomfortably.

It was hard for my ego and my belief system (all natural) to resort to pain meds, but i have to say that it does take the edge off sometimes.

Every body is different and i've learned that non-judgment in itself is potent medicine.

Sending peace and ease your way.....

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Limeaid
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Lymetwister, I know a lot about narcotics and pain management, as I have been an Oncology RN for many years, and my focus was in pain management. Less than 1% of people that take meds for chronic pain become addicted. The truth is, if you are NOT taking medication to help with your pain, your recovery will be much longer. There has been a lot of research on this topic. Think about it, if you are in pain and you take nothing for it, even Tylenol or Ibuprofen, you probably won't do much. Maybe lay around, little if any activity. But if you take something to aid with relieving the pain, it will help you to get out of bed, take care of your kids, work, whatever you need to be done. Believe me, I have dealt with many patients that were afraid to take any pain medication, and these were cancer patients that had terrible, terrible pain. Just like us lyme patients, many of us are dealing with severe pain on a daily basis. There is a lot of misinformation about narcotics out there. But on the other hand, it is safe to know that you can build up a tolerance if you are on them longterm, as well as other concerns. Hopefully your doctor and nurse will be aware, and will support you during your illness and provide the teaching that needs to be done. If you have any questions, please pm and I can talk with you more about this. Please know that I am not pushing narcotics on anyone, I feel bad when I know that someone is dealing with severe pain, and there are many many options to help deal with it.
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JOLA
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Gary
I currently take methadone for my pain issues.

Like you most of mine is head pain 24/7. I

cannot take perc or most of the other pain meds

as they hurt my stomach terribly. Methadone has

however been a lifesaver for me. I only take

it once a day and some days I go w/out because I

worry terribly about addiction issues. It took

quite a bit of convincing from my LD for me to

understand that we don't heal when we are in too

much pain. It's like sleep. If you can't sleep

get something - anything - you need to sleep to

get better. My LD said that there was a chance

I may become dependant - not addicted no it.

Sometimes our bodies become dependant on things

out of necessity. The thing for me was to focus

on getting better and I can't even come close to

it when I'm in too much pain. So I am careful

but for now I rely on pain meds to help me thru

most days. However I do it carefully and am

anxious for those days when I don't need to take

anything. Hope you start to have some good days

soon.

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sutherngrl
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I believe the addiction thing is over rated. If you are in pain and something works, then do what you have to do.

Lyrica helped take the edge off for me!

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EscapeFromLymeland
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Forget the words "addiction" and "dependence" - the CNS drugs have side effects, interactions and adverse reactions.

Those reactions are the same as the symptoms being diagnosed as Lyme disease by many LLMD's.

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sparkle7
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re: What I am saying is that just because someone takes enough opiates or other CNS drugs to cover up their pain, anxiety, etc., does not mean they are getting better.

-

I've been ill for 15 years. I've tried many, many things... Sometimes they just don't work. I'm not taking any other drugs except 1/2 of a 5 mg pill of Oxycodone or 1/2 a Vicodin when I need it.

It's a really small amount. I've been taking it for years & I haven't felt addicted or built up a tolerance. I agree with Lymeaid.

Most people have an outdated understanding of what med meds do for people in chronic pain. It's barbaric for people to suffer so much & it's also unnecessary...

I have always been into natural medicine. I'm actually using an herbal protocol to try to heal babesia. I'm the last person who would have thought drugs are a lifesaver - but the pain meds are really useful.

Being in chronic pain makes people have a great deal of anxiety. It's like being locked in a box & not being able to get out. There's alot of narrow-mindedness from people who aren't in pain as to how to treat it.

Just let them live in our shoes from one day & they would be begging for help... I still get crap from my doctor about giving me pain meds. He always asks me if I think I'm getting addicted, etc.

At least he still gives me the prescription. Some doctors are afraid of giving people pain meds since the gov't will call them on the carpet if they prescribe too much.

In that case, go to a pain specialist or clinic. There's one about 4 hours from me near Atlanta. They only charge about $40 for a visit & consultation with a doctor.

All of this trepidation is really outmoded. It's a relic from another era... Might as well go back to leeches & blood letting or thinking that taking mercury will lead to immortality.

In the case of chronic pain - "No pain, no gain" is very far from our reality...

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springshowers
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escape

I am sorry I do not follow.

My Pain meds are not causing side affects that mimic lyme disease symptoms.

The only thing I have noticed and this is my own guess is that my digestion has gotten slower.

And if I did not get down the pain i would not sleep or walk or talk.. And I would be in a heighted stress mode.

Even if i follow along your sample and pretend ...

Well it makes no sense..

Except. maybe if there are some who are taking slews of the scripts and one thing on top of the other it could be problematic.

But I surely do not think my MsContin is causing my lyme symptoms..

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littlebit27
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My pain meds do not mimic symptoms. I do not get the side effects from the meds. If I am uncontrollably dizzy it is a symptom, I know that because if it were a side effect it would happen more often.

Yesterday I told the doc the pain meds were working but wearing off. He tells me don't take more there is a risk of addiction.

So I tell him I'm not going to get addicted, I just hate being in pain. I am tired of suffering, so he says ok take more.

Getting addicted starts as a choice. If I woke up in the morning and wasn't experiencing pain I wouldn't take anything.

But since I wake up every morning with at the very least severe joint pain in my fingers and can not take my anti-inflamatory until almost 8am I need something so I can bend and move my fingers.

I've tried on more than one occasion to not take the meds and be almost unable to walk due to the pain. My body may be dependant by I am not addicted.

I would be miserable without the bit of pain releif I do feel.

I also have a high incidence of addiction in my family which makes me even more against becomming addicted. It would be a personal choice to start taking more than prescribed or to go buy them on the street if the doc wouldn't give me more and I am NOT going to make that decision.

I'm on 4 different meds for pain, anti-inflamatory, muscle pain, general pain, and nerve pain. And without any of them I am a complete mess.

--------------------
*Brittany Lyme Aware on FB*
http://littlebithaslyme.wordpress.com/

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lymetwister
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I don't get what Escape is saying either.

I don't understand what he/she is saying about pain meds causing Lyme symptoms.

It takes the edge off and allows me to function at a low capacity, but function.

I'm not so drugged up that my eyes are closing and I don't know whats going on around me.

In fact, it seems to help clear my mind so I don't feel so confused and out of it.

I will see a pain specialist and get on what is recommended. Like some of the others, I take small amounts of Percocet and that seems to take some of the edge off.

Tumeric and the like don't do anything for me.

I wish you would explain how these medications cause Lyme symptoms. I don't see the correlation.

Gary

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trigal2
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Certain medication ( especially benzo.s and narcotics) can produce a wide range of withdrawal/tolerance w/d symptoms that mirror lyme.

Benzo.' such as Valium can cause an array of CNS and behav. w/d symptoms ( pins and needles, crawling sensations, anxiety, depresonalization, panic, light and sound sensitivity to name a few).

Narcotic w/d can cause symptoms such as; flu like symtpoms, chills, sweats, decrease in pain tolerance and threshold, body pain, and gastro issues to name a few.

So, yes one could confuse some lyme symptoms for withdrawal/ tolerance w/d symptoms from these two types of prescription medications.

The problems comes when someone is not aware that they have developed a physiological dependency and begin experiening w/d symptoms.

In my clinical practice, 75% of the clients I treat for chemical dependency are those who took meds for pain relief - the other 25% took meds to get high. Some people are very sensitive and even taken as directed can become dependent and no amout of will power is going to stop the w/d symptoms. Your will power and not being an addict will come a long way in working through the w/d but your body will still react.

So, I am not sure where some people are getting their info. from but it is not correct and very misleading to think if you take prescription meds for pain relief you could not become dependent but if you take it to get high you will.

While there does needs to be a distinction made between addiction/addictive behav. and dependency, the two are not mutually exclusive and one can lead to the other - even in the world of pain relief.

I am not saying do not take pain meds, I am just saying educated yourself to the risks and be aware of some of the similarities between w/d symptoms of certain meds and lyme symptoms.

As with most things, there are many benefits to taking pain meds but there are also risks.

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djf2005
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Gary-

I started out taking meds in this fashion as you are about to embark on.

I have been in pain for periods of the last 3 years so intense I wanted to die, so pain meds were a welcome help.

Now, 3 years later of using them (low dose) off/on, I have to go through the hell of getting off them....again. (my choice)

Each time I have relapsed or my pain has flared badly, I turned back to narcotics for the immediate relief it provides. Temporarily, I feel better, and experience the better focus and less clouded thinking along w/ reduction of pain.

Unfortunately, as time passes, you will have to keep increasing the dose, and addiction is not an option, it's a given when using narcotics daily for months to years.

One may not become a junky, or a full blown addict in the sense of the word, but becoming physcially addicted to them when used 3x daily for years is unavoidable, you will experience withdraw and yes, it is worse than Lyme could ever be.

Just weigh the pro's and cons. If I had to do it over, I would think long and hard before using it, although I know that feeling when you first start taking them how amazing it feels to be free of the suffering, so I can't blame you.

Just be mindful of what is transpiring and what will transpire and prepare yourself for the reality of narcotic use. It is not a benign, harmless way to kill pain for sure.

I have been on doses of percoset of up to 40mg (10mg x 4 daily) for 6 months at a time and then down to 10mg daily for 6 months. All and all I have never really taken very high doses compared to some but I wish I had kept it under better control. I will admit I did at times take more than I should have to try to escape the hell I was in. I am not ashamed for doing this, as it happens often and full blown Lyme is hell, just want you to know it's not as hard to pop one more here and there as you think.

Very good idea:

Give the bottle (if you decide to move forward) to someone you love and trust and has your best interests in mind. Someone who you know will not abuse the med itself, and have them give you the allotted amount each day or every few days or what have you. This way you will not be tempted to take more and will not have the ability to do so.

It is in this manner that over the last 6 months I have managed to get down to just one 5mg pill of oxycodone and will soon be discontinuing it altogether. My pain is still bad, yes, but not kill yourself bad, and my time w/ narcotics is coming to an end. It's like playing w/ fire, at least for me.

When something has that much power to take away some of the horrible suffering one endures, it becomes very very enticing.

There is validity to the thought that it becomes hard to differentiate daily withdraw symptoms from lyme symptoms as time passes. When one's tolerance becomes higher & higher, withdraw can occur 1-3x daily, even between doses as the body signals for more medication that it feels it needs.

Bear in mind that when one withdrawls from narcotics, it is so hellish because the body actually thinks it is dying, so it goes nuts and all systems go haywire in an attempt to remedy the situation.

If you do decide to give it a whirl, which you seem predetermined to do so, ask for oxycodone for your next rx W/O the aspirin as it will be MUCH easier on the body/liver to tolerate.

Oxycodone is just straight percoset w/o the additives.

Keep in mind also, that long term narcotic use will actually increase cytokine production in the body and actually cause more pain, forcing the patient to take more & more for the same amount of relief.

These statements I have made should not be and have not been applied to all of those who have used of who currently use narcotic medication for pain management.

Just my experience, and just thought I'd share.

I am not against the use of narcotics, I just think it should be considered in depth before taking and reserved for those who are ready to throw in the towel from their pain. I was one of those people, and it sounds like a lot of people on the thread here were/are too.

There is no shame in pain killers, chronic pain is an indescribably horrible thing.

Lastly, severe chronic pain w/ Lyme is often indicative of detox issues and the hampered ability to do so. At my worst, when my pain was the most severe, I was a detox novice and really not informed at all. At this point, now that effective measures have been employed, the pain albeit it still signifigant, has been reduced greatly.

I am glad something is helping you w/ relief Gary.

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

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sutherngrl
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Years ago I took Xanax for 1 year or a little over a year and I had absolutley no withdrawal isssues. Once the anxiety was gone, I started to forget to take my xanax. Next thing I knew I wasn't taking it at all anymore.

I also took Lyrica for pain for about a year and a half with LD. As the pain got better I gradually backed off of it. No side effects with that either. Not trying to convince anyone that there are no side effects from these meds, just telling how it worked for me.

The only medication that I ever had side effects coming off of was antidepressants. I guess we are all different.

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desertwind
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I've been viewing these boards for quite some time but this posting topic finally got me to join as a member.

This topic hits very close to home for me.

Escape and Trigal; You both sound like you know what you are talking about. I agree with pretty much everything you have shared as it is pretty much what my Psychologist has told me and what I have experienced.

Trigal; I have followed a couple of your postings on this topic and you really sound like you know your stuff with this. I see on your profile you are a Psychologist? If this is true then you are a Doctor right? A Doctor of Clinical Psychology and as such I would think that you know much more the the lay person on this topic. I for one appreciate your insights.

With the exception of abx.'s for lyme I have NEVER taken any pain meds or prescription drugs, until I had major surgery last year.

Due to complications I was on low dose Percocet and Valium (used as a muscle relaxer)for 3 months.

When it came time to stop I asked my surgeon if it was okay to stop all at once and he said, "well of course!".

"Well, of course" landed me in the ER with sezuires and dangerously low blood pressure.

I became extremely ill and developed some real scary problems due to withdrwawal.

I ended up seeing a Psychologist and she taperd me off the Perc.,and then safely off the Valium. It took close to 3 months to be tapered sucessfuly off of both.

So I am an example of someone who never took narcotics or Benzo.s, I have no history of addiction but my BODY became dependent on these drugs without my knowing it.

Just goes to show that everyone is so very different and will respond to meds with such variablity.

I am not saying not to take pain meds, but like Trigal said, be aware of the risks because you could be one of those people who are very sensitive.

And BTW....my withdrawal from Perc. and Valium felt very much like lyme and company.

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lymeinhell
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Focusing more on the source of the pain, rather than covering it up, might be a better route.

Address magnesium deficiency BY IV and ALSO the resulting muscle spazms you have on your head could have a significant impact on your treatment progress.

This type of referred pain is a 10 on a 1 to 10 scale, and often can lead you to believe your brain is too big for your skull or is swelling - when in fact your skull muscles are in spazm, creating ridiculous amounts of pain around your head.

You've gotten good suggestions for nerve pain.

Perhaps a pain mgt specialist can actually help you sort out what type of pain it is and come up with a resourceful solution (although mine never did).

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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ping
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Hi Gary - I never took pain meds while in tx, but sure could have used some IV Morphine a couple of times. (Forget anything else, other than IV meds, as orals are absolutely useless to me.)

So you have an rx for Percs tid. This doesn't mean you have to take them tid. Just take them when you have to take it. I agree that too much pain can be a hinderance to your recovery, but I also have known numerous people that would stop abx rx's and keep the pain meds, when they were short of $$$$. They never went back on abx, or delayed it for so long that their abx tx is now almost non-effective.

Take them when you need them and not any other time. And I disagree with turning over the meds to "someone that you trust", as unless they've ever enountered severe, chronic pain, they know nothing of how you really feel.

Best to you. Be careful and hopefully, pain free. (Watch out for constipation.)

--------------------
ping
"We are more than containers for Lyme"

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djf2005
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Turning over your meds to someone you trust such as a close family member and preferably someone who lives w/ you has nothing to do w/ the concept that they do or do not understand how one's pain is affecting them.

It is simply putting into place an accountability measure that otherwise left unchecked can have long term consequences.

One does not need to "understand" how pain feels or how it affects someone to grasp the concept that this person should only take this med 3x daily max and that is all I am going to give them for their own good.

Trust me, I know 10+ Lymies on pain meds now, and most of them acknowledge the fact that if they had been held accountable to a dose that they themselves could not alter, they would most likely have been able to get off the narcotics a long time ago.

Severe chronic pain is not something to mess w/, but neither are narcotics. There is a reason people take them, and more often than not, is because they relieve a lot more than just physical pain.

Best

Derek

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

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sparkle7
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It's interesting that there are so many points of view. I agree with Lymeaid... She seems to be a professional, too.

I guess you just have to try it out & see if it helps. We all have different genetics, body chemistry, philosophies...

I have not built up a tolerance & I could go without them in a minute if I was better. I just take a really small amount, though. Believe me, when I get my menstrual period - the pain is excruciating - on top of all of the Lyme & co-infection pain I go through!

I tried so many things in the past 30 years... Nothing has helped. The pain meds are a lifesaver. Some of us get so many different kinds of pain. We can't even begin to describe it. Most doctors think Lyme is a big joke.

So, I guess you have to decide if you want to try to deal with it & figure out how it has to be done. I just don't think anyone should be afraid of them unless they have had an adverse reaction.

They do help many people. I never took Valium or Percoset. I tried Lyrica & it didn't help me. Vicodin & Oxycodone seem to help me the most. I never had to take Morphine or Methodone but some people really do get help from these things.

I wouldn't just rule them all out because of the addiction factor. People don't seem to be freaking out about anti-depressants even though they seem more addictive to me than pain meds.

It's become questionable if anti-depressants actually help people who are depressed. Opiates have a long history. It is good to be careful but don't discount the positive effects of pain relief.

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elley0531
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I have taken klonopin for 4 years now off and on. The most I take is .5mg twice a week or so.

I have never had any adverse reactions with the exception of thirst and slowing of the digestive tract. I take infrequently because I wish to avoid any potential problems and there are times i go weeks and have gone months without it.

I know drugs can have horrendous effects on one's system, and I do not tolerate narcotics well so i have no experience with them, but klonopin has helped me through some very bad times. It actually helped me break my depersonalization/derealization cycle and yes I am using those terms right (been diagnosed by a LL psych doc, therapist, and confirmed by two other docs).

Natural methods are always best and I use mostly this, however at times I just need a break to save my spirit a bit. If I find something else that can do this for me, great...but for now I am happy to have the pills for the days when its just too much.

Going along with what others have said though-I do try my very best to take it only when things are very bad.

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trigal2
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While I agree with many of lymeaids comments on the nature of chronic pain, I have to question the 1% reference. Is that from a current research study?

The National Institute on Aging (NIA) reports a much higher percentage as does the National Institute on Drug Addiction (NIDA).

I do not have the numbers in front of me but anyone who is interested can get the info. from the website(s).

This can be mis-leading since we do not know what population that 1% is?

Are we talking about 1% of the general population who have taken prescription meds? 1% of Ortho patients? 1% of Fibro patients? Or is that 1% of Oncology patients?

It can be difficult to do a long term follow up study in Oncology due to the high mortality rate. So that number could be much higher but unfortunately one would never know due to confounding variables such as mortality.

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Limeaid
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The study came out about 5 years ago and it was

actually on cancer patients that take narcotics

for chronic pain. Maybe there are more current

numbers out now. I think everyone here has

valid points. We have to remember that even as

Lyme patients on antibiotic therapy, most of us

are on different regimens. So just as we are

all taking different antibiotics whether IV,

oral, or IM, pain medications are not going to

work with every patient. There are so many

different medications out there, and some people

are taking narcotics for the very first time in

their life. There needs to be a lot of teaching

and support that goes along with starting pain

medication, it that is what the physician and the

patient decide to try. What works for one

person, may not work for the next. Keep in mind

there are other therapies that work for pain,

herbals, massage, acupuncture, stretching,

exercise, and of course non-narcotics. Please

forgive me if I am rambling, my brain is not

functioning at full capacity these days.

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lhines65
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Pain meds are an individuals choice. No one knows the pain level that you are at except you. I am an 11 year lyme patient and I can say without my pain management doctor and pain meds my quality of life would have been 0. I stayed in bed almost 2 years with severe horrible headaches and now dibilating leg pains. Pain meds gave me my life back and the strength to fight this disease. And yes, to the people who take vitamins and supplements, I tried them all,and still take many, but when you have pain at a certain level the help is minimal. I can play with my grandchild and get out and go to the store and have a life that is worth living instead of sitting around wishing I was living.

This is a very personal choice, and do not let anyone guilt you in to staying in pain when you can be living a life where the pain is tolerable and living is pleasureable again.

Hope this helps. It is your decision, just know all the facts and research, research, research.

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ping
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quote:
Originally posted by lhines65:
Pain meds are an individuals choice. No one knows the pain level that you are at except you. ...

This is a very personal choice, and do not let anyone guilt you in to staying in pain when you can be living a life where the pain is tolerable and living is pleasureable again.

Hope this helps. It is your decision, just know all the facts and research, research, research.

Gary - I like this answer. (Don't give your pain meds over to anyone else.)

--------------------
ping
"We are more than containers for Lyme"

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EscapeFromLymeland
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quote:
I have not built up a tolerance & I could go without them in a minute if I was better. I just take a really small amount, though. Believe me, when I get my menstrual period - the pain is excruciating - on top of all of the Lyme & co-infection pain I go through!

I tried so many things in the past 30 years... Nothing has helped. The pain meds are a lifesaver. Some of us get so many different kinds of pain. We can't even begin to describe it. Most doctors think Lyme is a big joke.

That sounds like we 'learned' from the same person. It is a common misconception. The drugs are very misleading.

Whatever the chemical reason, the CNS drugs alter peoples perceptions. They alter the perception of pain, of stress, of hunger, of fatigue.

They alter by various means. Some drugs, the atypicals for example mess with hormone levels. Non-pregnant women will lactate, grow excessive facial hair and worse. The drugs CAUSE diabetes. The drugs are not intended to be casually used as an anti-anxiety medication.

Mood stabilizers can do similar things. When people start changing medications and dosages, it is like a chemically controlled roller coaster ride. Not a fun trip.

The 'addiction' and 'dependence' issue is a big issue. There are other equally as big issues involved with the CNS drugs. The problem is not only with opiates.

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biggirl58
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lymetwister, do you find that percocet also lifts your mood? When I was well but had painful knees--it worked well and I did not get high but had a sense of well being just from 5/325--now I have the extreme anxiety and derealization and it does not do anything like it used to but it helps. I wonder what transmitters are hit by this--dopamine? well--who cares about addiction--feel good--Marilyn
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biggirl58
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excuse me--I meant no respect to you escape--you probably have very valid points but none of that happened to me-everyone is different. Marilyn
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