posted
My daughter is taking a huge load of pain medications and other narcotic type medicines. Her original diagnosis of Fibromyalgia was being treated, and still is, with running prescriptions of:
Hydrocodone (NORCO) for pain (300 per month)
Forfioricet (Butalbital) for migraines (40 per month)
Clonazepam (Klonopin) for sleep/anxiety (60 per month)
Zoloft (100 mg) for antidepresion (60 per month)
Carisoprodol (SOMA) for joint pain (60 per month)
Now that she's been diagnosed with LD and 2 co-infections, Babesia & Bartonella, she is also on the Zithromax/Plaquenil/Mepron protocol.
Her LLMD, Dr. H from N. Calif has indicated that we will be dealing with taking her off the other meds once the LD, etc. has been treated.
Now that she has been experiencing some major herx reactions, she has been doubling and sometimes tripling her pain meds.
We are quite sure she is addicted to one or more of the meds. My question is:
does anyone else take this type or qty of medications for their Lyme/Babesia/Bartonella symptoms??
We are seriously considering having her committed to a detox facility, but don't want to do anything that would interfere with her LD treatments.
We could sure use someone's advice.
Posts: 681 | From California | Registered: Oct 2005
| IP: Logged |
this is my opinion and what my llmds and pain docs have told me regarding my use of narcotic pain relief and anti-anxiety meds:
when you get the bacterial levels down your pain and anxiety will recede....then and only then should we/you worry about weaning off the meds.
my pain docs assured me that it is not too hard to wean from the narcotic i'm on..i'm trusting that they know what they're talking about.
also your daughter is probably not addicted to the meds but physically dependent on them. there is a difference...addiction usually involves psychological craving for the drugs...
but you do become physically dependent on these meds even at small qties...that's true for lot of different types of drugs besides narcotics and anti-anxiety meds.
how is your daughters tx for babs going.
i'm in week 4 of my tx...it's been a living hell. i have to force myself to stick w/the tx.
i really, really feel it's not working, cuz i feel so bad.
once i again i'm putting my faith in what the llmds say and the ppl on these boards about getting better at some point.
i sure hope they are right.
take care
Posts: 92 | From berkeley, ca, usa | Registered: Jan 2005
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
First of all, what evidence do you have she's addicted ? Normally, people don't become addicted if their taking pain meds and they actually have pain. It's when they begin taking them and no pain exists that they run into problems.
Now, I'm sure someone will come around and tell me this isn't so, but speaking from our experience, our son took very potent [fentanyl patches, tramadol] pain meds in his excrutiating months of pain. Once the symptoms subsided so did his intake.
He hasn't had any problems at all going off of pain meds. If your LLMD is closely supervising exactly what she takes, I'd be much more at ease. By his/her own admission they'll back off the meds when her symptoms begin to abate.
Perhaps, your LLMD can prescribe one stronger narcotic instead of several minor one's. My son took hydrocodone, it was a complete joke, never even made a dent in his pain. We actually hospitalized him for 3 days so our LLMD could visit him daily and find a combo of meds that would help his pain.
I'd be more concerned about the zoloft than anything. Whatever her emotional state, it's probably more attributable to bartonella than any psychosomatic illness.
My son would take pain meds and also meds to help him sleep because of the terrible insomnia involved with these diseases. Amytriptiline, ambien, while doing fentanyl patches and tramadol. Now, these meds all helped to some varying degrees, but the symptoms of lyme/babs/bart can be so horrendous that your left with little choice.
I'm sure your LLMD would be willing to try various meds that may provide her greater relief at less dosage. In our case the biggest concern we had was getting our son into a tolerable state with lyme/babs. The pain meds were secondary and a necessary evil. Turns out, once he started to feel better, he refused the pain meds on his own.
After months, and months of taking pills, many times the patient becomes sick of taking them and becomes very judicious on their own. I certainly wouldn't push the panic button just yet.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
posted
My doctor said basically the same thing. The pain meds go to the pain. Its the healthy people taking narcotics and getting a high that become addicted.
We're just trying to feel better and your daughter is probably desperate for relief.
On days when I do feel better, I don't even think about the pain meds. But those days are far and few between at this point.
When I started herxing, everything was so amplified I needed them even more than before.
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Lisa, just wanted to add that it sounds like your herxing. How do you know when the abx is working ? When you feel like garbage on it. Eventually, the herx's subside.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
If I am reading the amount of norco right, then your daughter has a serious problem and is probably addicted. Have you talked to her about this? Is she exhibiting addicitve behavior as well? Do you understand what that is? You may want to do some research.
I think it is imperative that this is dealt with and put first, even, yes even before lyme treatment (although you can still do both).
Get her into rehab that has a medically supervised detox. Opiate withdrawal is just about the worst pain in the world (makes lyme feel like a summer cold) but there is no real medical danger. Withdrawal from benzodiazapenes such as klonopin run the risk of seizures. This could be a concern especially with the lyme.
There is no use treating the lyme and not the addiciton. She will not get well. PERIOD.
Aside from the massive damage to the liver that that amount of norco can cause, her body and immune system can not handle being addicted and trying to heal. And herxing could be very painful, even more painful than it already can be.
There is no shame in this...it happens to more people than you know. Doctors know as much about addiction as they do Lyme, it seems sometimes.
There are so many better alternative pain treatments out there...you do not need to take...or I should say you can survive without narcotics.
I don't envy your journey ahead or hers. I beg you not to take this lightly. It sounds like you are not and I encourage you to follow your instincts.
I have had more experience with this that I ever wanted to. I have been there. What I have told you I have seen happen. Many times. If you want to talk about this more offline, please feel free to PM me.
Wishing you and your daughter the greatest of support,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I have been on very high doses of pain medication at times, often much higher than your daughter's. It is a very different proposition when you are taking these meds for pain. You need them! Not as an addict, but just to tolerate the pain. I don't think anyone who hasn't been through this kind of pain can imagine what it is like.
Please don't judge your daughter for what she is going through. It is completely true that as the pain recedes, so does your need for the medication. I have gotten to the point that sometimes I forget to take my pain meds now. I couldn't have imagined that last winter. I am at 20% of the dose I was taking last spring, and have gone down spontaneously, as the pain has receded.
I will need to go through some withdrawal when I finally get done with the last of my pain meds. I'm not there yet, but my doctor isn't worried at all. She sees that there is a big difference between an addict, and someone who needs meds for pain.
I would worry about the particular drugs your daughter is taking. Norco has a fairly large amount of acetomenaphin in it. This is very hard on the liver. It is easier for the doctor to prescribe because it does not require a triplicate, but it is potentially toxic for your daughter.
You could ask for another drug that doesn't have this problem, at least while she is taking such high doses. The last thing she needs to add to her worries is liver poisening. I take oxycontin, which has oxycodone as a time release, which is also easier on the patient. There are other options.
BTW, I also have to take anti-seisure meds for migraines, and I take Soma for pain and sleep as well. I'm thinking about being able to wean off the anti-seizure meds as my headaches have improved tremendously while in treatment. I rarely take the Soma now, maybe once a week. It does get better!!!
I didn't have Babesia, but have been in treatment for Lyme, Ehrlichia, Bartonella, Staph, and mold issues. It takes time, so be patient. I've been in treatment over two years, but I was undiagnosed for at least 11.If you do a search on here on pain, you will find many have asked the kind of questions you are asking. It is understandable. But its really true, she can need these meds now, and be OK later.
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Alison, I don't know if you've ever needed heavy pain releif, but the amount his daughter is taking is not very high. In a normal teenager who is doing it for kicks, I would agree with you.
In a child who is suffering the kind of pain that can come with this illness, putting her in detox could be sheer cruelty. Life can be unlivable with the pain uncontrolled.
I don't know her situation in all its details, but I would hate for her to suffer this judgement needlessly.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
I also agree with what others have written above.
I don't have the co-infections -- and "just" the Lyme itself can cause excruciating pain -- and different types of pain (nerve pain, deep bone pain, joint pain, muscle pain). If you put your daughter in a detox program simply for the sake of clearing out all use of narcotic medications, I think you would be causing her an enormous amount of unnecessary suffering.
I'm actually not even sure if, in a state of detox at a rehab center, where you go through withdrawal, she wouldn't herself be physically in danger as her body tries to accomplish that AND do battle with this combination of infections. And folks at a detox center would not understand the action of the infections.
If you are concerned that she is reaching more often for the pain meds that she has, I would definitely take it up with her LLMD.
I have heard of Hydrocodone as Vicodin, and if she is taking 300 per month, that means 10 per day. If she needs 10 Vicodin per day, then she needs a more effective pain med. In the scheme of pain relief available, Vicodin is actually not that strong.
If she is doubling or tripling her use of them -- that is, reaching for 20 or 30 Vicodins a day (or the equivalent) there is just a clear sign that it isn't hitting the pain.
Aslo, at those levels (20 or 30 per day) I'm thinking the Vicodin would be dangerous.
Does the LLMD know she is doubling and tripling her dose?
A slow-release form of a pain med such as MSContin would have her taking fewer pills and provide more -- and more consistent -- pain relief: BUT, I am not a doctor and this is something you should ask the doctor about.
It sounds like she's going thru some pretty difficult herxes and stages of worsening before the improvement sets in. She may feel she has lost your support and understanding if she feels you are accusing her of misusing drugs that she needs to fight the pain of this disease. I'm willing to bet that all of us can attest to the excruciating pain levels we have experienced.
I've fainted with pain w. this disease, never having done so before in my life. If she's reaching for more, she needs a more effective method of relief.
And instead of more pills, that could mean a long-acting one or a duragesic patch.
Ask the LLMD, ok? Also, finding a more effective pain med that can be taken less often (or applied as a patch) - will keep the levels of the medication constant in her blood. She won't go thru the ups and downs as narcotic levels in her blood and levels of pain increase and decrease as the drug wears off.
I also agree with the others when they say, Fight the disease first.
A body that is wracked with pain cannot heal.
I understand your concern, though, if she is taking 20 or 30 Vicodins a day. I would not jump to the conclusion that she is doing it for any pleasure.
I would get the LLMD on board with this.
As a caveat, if you go through the route of a pain clinic at a hospital (which I would do only thru the LLMD), please be cautious about the nerve block injections. Some folks here have had experiences with the nerve block injections making the pain even worse.
I cannot imagine what she is going thru w. all 3 diseases, because I "only" have the one. And the pain part of it is a very rough road. I would never have understood this without experiencing it first hand.
Best of luck, and warmest good wishes to you both.
Posts: 1066 | From East Coast | Registered: Dec 2000
| IP: Logged |
posted
I agree that the pain can be excruciating. I worry that if she goes to a detox center she WILL NOT receive Lyme treatment. Don't think it will happen!!! Very serious!
300 hydrocodone......plus all the other stuff??? How in the world do her bowels function at all?
Have they tried Imitrex or something similar instead of the Fiornal? That would at least cut back on some of the drugs right there. [I used to have killer migraines....fiorinal was not effective for me at all, but imitrex and Zomig were. She shouldn't have to take them every day I wouldn't think.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
I was wondering why she would need daily migraine medication as well.
I have never known a Dr. who treats fibro to prescribe these sorts of things... they like muscle relaxants and anti-inflammatories, but that could just be the rheumies I've encountered.
Isn't SOMA a muscle relaxant? It is possible she could substitute something like Flexeril for that. (?)
I was also wondering ab. the combinations of these meds. Quite a number of them have sedating effects. Does she sleep all the time?
You may want to get a pain clinic involved to be more sure of the combination of drugs going on here... but do have the pain clinic operate in communication with the LLMD.
All good wishes for a quick resolution to your questions, and for your daughter to feel better soon!
Posts: 1066 | From East Coast | Registered: Dec 2000
| IP: Logged |
me again...w/some more opinions from my experience.
my pain docs don't even prescribe norco or vicodin for the type of chronic pain we're talking about here.
these are both very short acting drugs. less than 4-6 hours of relief if you're even lucky.
and we all know you're not feeling very lucky while herxing, so i imagine (and can infer from the number of norcos your daughter is taking) fairly ineffective in treating her pain.
please explore longer acting narcotics like: oxycontin and fentanyl (patch).
i was admitted to the hospital with my first and thank goodness only migraine last year. the one thing that got rid of it was the fentanyl patch.
i have another lyme friend who has also found great relief from the patch after suffering for years w/little to no relief
this same med also helps to control my jaw and body pain. the patch lasts 2-3 days.
please explore this option w/ your llmd and pain doc. it's a much better option than all those norcos.
i'm also finding good relief from inflammatory type pain w/celebrex.
if the zoloft isn't helping her depression and/ or pain, i'd work toward weaning from that. i've read alot saying that ssri's are not the best choice of drug for lyme patients.
my experience w/various ssri's (which every "regular" doc in the book will throw at you like candy) has been a huge increase in ANXIETY...which i already have enough of!!!
NP40, thanks for the feedback...i'm hoping it is a herx and this is all getting me toward wellness : )
good luck
hi susan and alison!!!1
Posts: 92 | From berkeley, ca, usa | Registered: Jan 2005
| IP: Logged |
posted
If I remember correctly, you have posted previously about your daughter's G.I. issues. If that is the case, it is possible she is not absorbing some of these meds properly if she has a leaky gut -- not sure if the particular meds you mentioned could be tested for therapeutic blood levels or not but that might be something to consider.
Fortunately my hubby does not have much physical pain -- worse in the last year than in the first 4 years put together. However he had 4 psych admits early on before the Lyme diagnosis -- although that is not the same as a detox center I would be very doubtful that a detox center would be willing to continue Lyme treatment.
From what I have read about psychotropic drugs the best way to taper the dose is to reduce it by 10% a week -- 10 weeks total to stop a med. Many meds can be specially compounded in a liquid form to make this easier.
Hubby could not take Klonopin -- it caused terrible mood swings and did not help with Parkinsonian tremors. He does take IV Ativan for seizure-like episodes and the tremors. I have been told that Klonopin is 10 times stronger than Ativan which is 10 times stronger than Valium.
I really believe that a nutritional program with amino acids could balance the neurotransmitters and help get her off the Zoloft.
It is also my opinion that amino acids and the good fats can help decrease pain as well. As far as joint pain goes -- MSM plus Glucosamine and Chondroiton all together could help.
Headaches in Lyme patients are often caused by hypercoagulation or lack of sufficient oxygen to the brain -- lots of natural choices here -- gingko, vinpocetine, Vitamin E, feverfew, heparin, nattokinase, lumbrokinase -- I think I am missing a few but it is already past my bedtime.
And of course, there is magnesium for muscle cramps and also migraines I believe. Also I absolutely believe that 400 mg daily of COQ10 is one of the reasons hubby has less headaches and less severe cognitive problems than many of the other Lymies report.
Don't know where you are located, but I was trying to think of someone who would understand Lyme and possible addiction. The name that came to mind is the partner of Dr P.K.
The Kane protocol is very very expensive and I don't know if it would help your daughter or not -- hubby's LLMD says my hubby is the only Lyme patient he knows that the Kane protocol helped. See http://www.townsendletter.com/Nov_2002/detoxxsystem1102.htm
The IV glutathione and oral Phosphatidylcholine could be a less expensive option as it is much easier to find physicians to do this.
In my opinion, you need to try to decrease or go off these meds one at a time. Yes it could take weeks and even months. It took me two years to get hubby off Depakote, Zyprexa and Celexa -- we are still stuck with the IV Ativan but 1 med is better than 4 any day.
Levaquin then Mepron were the drugs that started hubby's pain problems -- primarily intermittent chostochondritis and overall body aches and pains. Still not sure if his occasional severe eye pain is from Bartonella or not.
Whether or not your daughter is addicted, I feel you need to attempt to try to decrease the total number of meds if at all possible. Besides the temendous cost financially, so many meds can have a very bad effect on the liver.
Good luck and be sure to let us know what you decide to do.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
I am an addictions therapist as well as a BSN...that's a nurse with a bachelors degree in nursing.
Addiction and dependence are not the same thing.
Addiction is self medicating to not feel emotional discomfort (a very brief definition), which is often accompanied by self destructive behavior. It is a disease process, hence the need for specialized treatment if this is genuinely the case. It is not simply weak will or immaturity.
Dependence is a physiological state in which the body has developed a dependence on a substance.
Do not take your daughter to rehab or detox if you are worried about the meds or amounts that she is taking.
First take her to a pain management specialist who works with chronic pain, and most importantly, lyme or fibro...not one who hands you a ten page questionare on psychological issues before he/she knows anything about your physical issues.
You are looking for a pain management doctor who sees the physical pain state and its causes, and then assesses the psychological issues, rather than in the reverse order.
Establish the source of the physical pain, its history and previous treatments, then assess what is most appropriate to return the patient to a state of optimal function.
Dr. H does not prescribe narcotics as far as I know, so I am curious as to the source of her prescriptions. If the source is a pain management doc, I would ask about shifting her meds to more long acting agents as suggested by others above. Vicodin at that volume can cause irreversible kidney damage. This is caused by the tylenol in the vicodin, not the hydrocodone.
If you are coming from a position of fearing that your daughter is an addict, ask yourself if her behavior is self destructive. Does she have a history of substance abuse independent of her tick born infections? Does she take these meds to escape her emotional reality or to treat her pain?
Chronic pain patients can take large amounts of varying medications without ever developing addiction behaviors. They take meds to return to a form of normalcy, to return to a level of basic functioning, not to medicate emotions or avoid facing life.
In any case, I would never entrust my daughter to an addictions treatment facility if she were in the midst of dealing with lyme and coinfections. They are not in the least appreciative of what we go through. They are not trained to be.
If your daughter is an addict, is abusing pain medications, then the pain management physician can help to determine this much better than an addictions treatment facility given her unusual infection status.
I have worked on both sides of this issue and am a lyme and babesia sufferer. I have taken or have current prescriptions for almost everything on your daughter's list of meds. This is not an unusual list of medications.
I too am in No. CA and would be glad to speak with you privately and to refer you to a pain management doctor in the south bay area if you would like.
The risk of being misunderstood and losing continuity of care for her infections is very real if you entrust her to just an addictions treatment facility at this point. She may loose ground that she can never recover. She could also be left in excruciating physical pain in order to lessen your fears.
Withdrawl from these medications can be managed relatively easily when there is no need for them in the future. Pain management with our diseases is a very real challenge and a necessity.One that must be met with compassion and expertise, rather than fear of the socially unaceptable addictions label.
If we base our decisions and judgements on fear, then we are usually left with poor choices. Is it the list of medications that frightens you or is she behaving as an addict? If it's the list and the amounts, then take this up with a pain management specialist who can help her as well as educate and help you with her medications.
posted
Dear DAd, I have a daughter suffering from lyme AND a son who is a RECOVERING addict, so I have been especially concerned about pain meds. My daughter's LLMD is very cautious, and I trust her to err on that side. She has reassured me that oxycontin use is okay. Dependence? Possibly. But a slow weaning under doctor's care should not be a problem. Certainly not as big a problem as enduring the pain she is having now. AS far as the other drugs, I agree that keeping the organs detoxed is very important. There are many options. I would suggest you ask your LLMD to confer with others to determine protocol. Our LLMD uses Marco Pharma products, and they have been very effective for my daughter's severe grastric problems. As for addiction, I take issue with it being labeled or distinguished at an emotional or behaviorial problem. It is a physical (biochemical) disease, just like asthma, diabetes, etc.. The difference is that it manifests in symptoms related to behavior and emotion, just like bipolar disorder, etc. So does lyme if it targets that portion of the brain! If we learn nothing else from lyme, I hope that we learn to view mental health in a more accurate way. Mental, emotional illness should be placed under the physical umbrella as a neurological malfunction. I apologize for digressing. I agree that you treat the lyme, detox, and worry about weaning off pain meds later. I almost always double check with my pharmacist when I have concerns about a medication or combination of meds. They come at this from a different perspective than the doctorand will probably be better versed in how they are affecting her body overall.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
| IP: Logged |
posted
Four years ago, I was at a pain clinic. The doc prescribed time-release morphine and strong muscle relaxants. Over the next 6 months, he kept increasing the dosage of the morphine. Since it was time-release, it was something that you were supposed to take every few hours. I never had so many people telling me to take MORE drugs. Very weird feeling. I was not good at taking the amount they told me, because I could tell they were causing problems.
Long story, made short. I decided I wanted to switch over to a different pain drug that I only had to take if the pain was absolutely unbearable. After much discussion, he switched me to Norco.
Well, I went through withdrawals. It was horrible. I finally got something from the doc to help with the intestinal cramping and also something to help with the anxiousness. That makes all the difference in the withdrawal.
I was still in a lot of pain, so my experience is that yes, you can, become addicted to something even if you're in pain. The doc had told me when I started that if I took it for a long time, I would probably become mentally dependant on them, but not physically. That is not my case!!
It certainly was not a pleasant experience, but with help of the drugs I describe above, it was very doable. I only took the other drugs during the withdrawal... about 10 days.
If your daughter is taking 300 Norco a month, it would be hard to imagine that she wasn't a bit physically addicted.
Posts: 856 | From Texas | Registered: Jan 2005
| IP: Logged |
posted
I wanted to make sure I thanked all of you for your input concerning our daughter's struggles with LD and her medications.
After reading through all of the posts, it seems clear that she may have a dependence on the pain meds, but not an addiction.
She does have a tendency to rely on all of her medicines rather than attempt to purge the toxins from her system. She will not drink the needed amounts of water nor will she take responsibility for the supplements our LLMD has suggested.
I believe she's using the combination of her pain meds with the other "pain masking" drugs to escape from the pain. Unfortunately when the meds wear off the toxins are still in her system.
Over the past couple weeks, since she's added Mepron to her treatment, she's been almost incoherent. She's fallen asleep at restaurants on two separate occasions. She's as much as passed out while putting on her makeup. Her speech is extremely slurred and her ability to hold a normal conversation is nill.
Her personality has completely changed from a very bright engaging young woman to a zombie-like person unable to think clearly or act herself.
Upon examining her meds I discovered that she has been taking 3 times the prescribed amounts of Colonopin and 4 times Soma. She also has taken 100 Norco in the past 6 days.
I guess my real concern is that toward the end of the month she will have exhausted all of her medicines well before they are able to be refilled.
The majority of her medicines have been prescribed by a pain management specialist. He is not a LD "believer" and he will not allow the medicines to be refilled early. The other medicines were prescribed by our family GP, again a non-believer. Our LLMD is 10 hours away and he only deals with the Lyme and co-infections treatment (we're in Southern Calif and he's in Northern Calif).
Our daughter has tried just about every combination of pain, sleep, depression drug combination there is, none of which takes away the pain.
We're in a real difficult situation between being able to provide her with the pain relief she needs and the need to insure she's not harming herself.
Our daughter is 27 years old. She became so ill 4 years ago that she has had to move home. She is on disability with her employer and is not able to get out of bed most days.
It has fallen on her mother and I to help her get through these times. We certainly accept the challenge, its just that we have no previous experience to help us know exactly how to proceed.
We are very fortunate to have found a wonderful LLMD, but its just been since October that we started treatment.
With the help of God, her LLMD and those of you on this BB, we will get her through this thing.
Again, thanks to all who responded, it has helped tremendously.
LymeDad
Posts: 681 | From California | Registered: Oct 2005
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Lymedad,
Even those who are not on pain meds have a very hard time on Mepron. The falling asleep and slurring of speech is seen in people on Mepron alone. Adding in the use of pain meds makes a very confused picture.
I'm really glad Carol Ann was able to weigh in here. Her advice helped me a lot when I was in the worst period of my pain. I was very resistent to taking pain meds, as I have a brother with a history of drug addiction, and the prospect scared me. I've had to educate myself alot, and I don't know if I would have made it otherwise.
Good, comprehensive care makes a big difference. Any chance you could come up to the clinic that Carol Ann suggests? I have the name of another one in San Francisco that I have gotten good reports on. It is also Lyme aware, and uses multiple techniques in addition to the meds. It might be worth the trip, if there isn't anything where you are. It is much better if one place is prescribing all the meds.
I know how hard it is to watch your loved ones suffer through this. It takes a lot out of you, and you have a tremendous amout of courage for sticking with it, and being willing to learn. Your daughter is very fortunate!
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
A couple of years ago, I could've written verbatim just what you wrote...sorry, not enought time to go through the rest of the replys.
I was even on the Durgesic patch alone with the Hydrocodone and Trazadone for sleep and through some anti-depressants in there...
TODAY, I am pain drug free...however, I was one them for several years...you see, I always said, those of us who need the pain meds to control our pain, are not experiencing the euphoric feelings as one who is just using them for recreation.
Do some of the folks in real pain become additive? Probably, but, I just wanted to let you know that if it were me all over again, I'd still go the route of taking pain meds. Even though there were a chance of be becoming addictive.
I'm a 54 year old women who is in remission after over 3 years of antibiotics and many other things...I even stopped smoking after 30+ years.
quote:Originally posted by lymedad: With the help of God, her LLMD and those of you on this BB, we will get her through this thing.
Again, thanks to all who responded, it has helped tremendously.
LymeDad
Wow. My heart goes out to you. Everyone here really gave you some great help. I think you will have to control the med situation yourself. That in itself will be far from easy.
She could really be in trouble if she is not drinking plenty of water and taking all these very strong meds. Her kidneys will really take a hit....and like someone said, it could be irreversible damage.
I'll be praying for you and your family.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Yes, running out before the pain clinic will refill the pain meds may become a problem.
This gets dicey, because if you ask them for help in weaning her back down to the prescribed dose, they may lose trust in her and not give them to her.
I too think you got excellent advice from Carol Ann.
Is your daughter open to talking about this with you? It seems that the most motivating factor to keep on the right dose could be that very danger: that if she runs out, she'll be w/o them entirely, and she will go into an extremely difficult withdrawal for which she made need medical help.
Whenever I was on strong pain meds, the monthly counting by the doctor (in my case my PCP) kept me honest, even as it made it possible for me to let him know when I was in more pain than the meds were addressing. I also felt he was trusting me w. these meds, and I wanted to be worthy of that trust.
I am sympathetic about having different people doing different things. I dealt with an LLMD, a pain clinic, and a Primary Care doc, but they all talked w. each other and knew of what the others were doing.
Is there any chance of finding a GP who would be more receptive to the LLMD? I have found it crucial to have a PCP who, while not Lyme Literate himself, recognizes that an LLMD could know more than he does, and he defers to the LLMD.
If the GP is a "non believer" then perhaps there is some working at cross-purposes here.
My PCP supports in the day to day stuff what my LLMD oversees every 2-3 months. I guess I am lucky to have found this good team approach.
The way we worked it, the pain clinic made recommendations for pain meds, but my PCP oversaw them day to day. I got the prescriptions from my PCP every month. The pain clinic acted more as a consultant -- I didn't get the meds from them.
Maybe it is worth looking for a GP who would be receptive to learning ab. Lyme, or at least deferring to LLMD. If she likes her GP and feels he or she is willing to listen and understand, perhaps that kind of doctor-patient relationship can exist where she wants to earn trust.
Treating these diseases requires such a delicate balance and constant vigilance. Sometimes I know that the treatment is too aggressive for me at a certain time, that it has worked effectively and I need to take a very brief break. My LLMD allows me both treatment breaks and also pulsing of the meds. He always encourages me to listen to my body.
Maybe it's taken me longer to improve because of that, but I'll take fewer of the extremes. Sometimes I just know that something has become unbearable and my body needs a break.
I too was a grown up suddenly dependent upon my parents again after having attained my own independent life. Their support meant - and still means - the world to me. I am sure it was and is harder on them many times than it is on me. They watched me suffer and felt helpless, even as they did all w/in their power to care for me.
When I was very, very sick -- very nonfunctional -- and roughly the same age as your daughter, sometimes my Mom would sort of take over and make sure lights out occurred at a certain time, that I ate regular meals, etc. I found my own ways to keep my sense of independence (allowed to have my own time and space, be w. my friends, etc.). - but I deep down I really appreciated the structure that my parents were providing.
If you can talk with her in a non- accusatory way ab. her use of the meds and find out how she explains it to herself, maybe it will give you a clue as to how to proceed.
Maybe she is feeling hopeless ab. treatment and wants to escape. Maybe she is in so much pain she is afraid no one understands, etc.
If she is not de-toxing by drinking water, etc., then perhaps the treatment has simply become too much for her for that reason: the toxicity is building up and making things that much worse.
Maybe in that case you need to pull back on the abx and treatment -- not bec. of the pain meds, but because of detoxing from the treatment drugs.
Have you talked w. your daughter ab. this? The danger of running out of all meds at the end of the month is a real one!
Could she say why she won't drink the water, take the supplements, etc?
Is it her way of rebelling, denying, defying a disease that has changed her life? The one way she feel she has any control, and can make it not true?
I hope you can follow up w. Carol Ann.
I have a lot of sympathy for you all. I found someone at the university to talk to about being a grownup yet being dependent. Having always to walk the fine line of having a disease that made me dependent but also needing to preserve SOME form of independence. It's tough for young people, in 20s and 30s. (As for everyone in different ways).
Sending you warmest wishes for the road ahead. You have support from all of us.
Posts: 1066 | From East Coast | Registered: Dec 2000
| IP: Logged |
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Dr. H is great about his acceptance of the need for supplements...I think he's right on track.
Also, Mepron left me feeling similar to what you describe above.
You are right to be concerned about her resistance to drink fluids and help get the toxins out of her system. Especially when she has taken that huge amount of tylenol with the hydrocodone. Her kidneys are under a great deal of stress from the tylenol alone, not to mention the toxins from the other meds and the bugs.
Perhaps it's time for a second opinion on pain management?
Your pain managemnet docs may be hesitant to use the stronger, longer-lasting medications to protect themselves. You can ask them what their policy is on using the medications that may flag them for excessive prescribing.
If her intake of the meds exceeds her prescription, it's time to reevaluate her needs and the medication being used to meet those needs. Have you spoken with the pain mangement doctor that your daughter sees now about your concerns? That could be a good first step.
I would worry more about the effects of the meds on her organs rather than addiction issues at this time. There is a good pain management doc in Los Gatos. I realize that this is far away from your home, but she may be able to suggest someone in your area for a second opinion.
In any case, you certainly have my support and prayers. This is a really tough situation for a parent to watch progress. Our tick bugs alone are a misery that is agony to watch in our children. Two of my children have lyme and coinfections too.
If I can help in any way, it would be my pleasure. I feel so powerless over my kids' pain and misery from these diseases, and would give anything to change it for them.
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
After reading your last post, I'm still stewing on this...
You're a wonderful dad, first and foremost! Your love for your daughter is very clear.
The whole situation feels like you are left in a position to handle problems that are not your speciality....The local docs are not on board with the lyme treatments, Dr. H is not nearby (not an indictment, just a fact. I think he's a terrific doc), the pain mangement doc seems off the mark to me, or perhaps there is a breakdown in communication. I dont' know.
It just feels so difficult for you and your daughter to get someone to manage her pain situation with compassion and the proper amount of oversight. Now, I'm stretching here as I don't know how well they communicate with you or her.
Coming to a point of using more medication than is prescribed is common in pain mangement, rather than being a crime. That's when it's time to reevaluate and formulate a new strategy to support the patient and conquer their pain. If when the pain docs reevaluate they don't see a need to change the medications or their approach, then I would move on right away. I simply don't know enough from your posts to say with confidence that it's time to find a new pain doc...It's certainly time to tweak the approach to your daughter's pain.
Have you been able to ask Dr. H about her new symptoms with the Mepron? I know he can be tough to reach sometimes.
More to the point, can you communicate with your daughter's doctors given that she is an adult? Will she allow this or will the doctors?
When I was at my worst with these infections, I was in a state of agony...emotionally, spiritually and physically. I was fortunate to have a terrific LLMD in San Francisco who managed everything for me...who took the reigns when I was not in the best shape to make my own decisions. It would have been easy to give up OR to make mistakes in my treatment protocol. He saw this and helped me to set up a framework to keep me on track, reminded me to ask friends to back me up, to make lists of my drug consumption, as well as my symptoms, etc...to write it all down as my brain wouldn't retain the information accurately.
Having my family nearby would have been a Godsend! But it also would have been miserable for them to be on the outside trying to support me. I see my children in pain and misery with these bugs and it makes me feel terrible. I want to take it away from them. I want to fix it.
They are teens so I have control over their care to a degree. I also have the advantage of having been through all of this myself, so it's not as frightening as not having the experience myself.
I wish that I could offer some simple answer to your situation, but that's not realistic. Please know that you have my support, as well as the support of everyone here. You aren't alone and we'll help in any way that we can.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
Carol Ann, I was thinking more about this, too.
It does seem that this young woman has come to a kind of cross roads in the path of recovery.
Things are not working. There is no clear path to take, even a temporary one that is clear. There is serious risk of danger (the Tylenol levels are alarming, that alone will put the liver at risk, too). And it almost seems as though the daughter thru her actions is signalling that things have reached a sort of "crisis" in the management of the disease.
I am really distressed to hear that the GP is not a believer and not on board w. the LLMD's dx.
I don't know if a more integrated approach is what is needed, or the concentration of advice through a single person. Perhaps no single person can advise, but then there must be a medical team integration.
That the treatment and management of disease issues have broken down signals need for some kind of change.
I didn't realize that there might be an issue w. the parents participating in the medical care as she is an adult. I was an adult, too, but took it for granted that my parents were with me and told them everything.
Actually, I spent plenty of times on the parental shoulder, weathering the storm showers of tears. (I know it is hard on the parents). (It helped me a lot when they stayed so positive and optimistic. They may have been frantically worried, but I only heard their positive beliefs -- for which every person's need would be different).
My hunch would be to start w. the LLMD. Maybe he can refer out to people he knows, could talk to.
I was very fortunate in that I was able to put together a medical team that consisted of folks at least willing to learn and believe ab. Lyme and the co-infections. That did take some time.
Having an integrated team allowed me to ask one Dr. about psycho-pharm issues (drug interactions), another about my own coping, etc.
The pain clinic was actually only *marginally* helpful. They didn't know anything ab. Lyme. They came up w. the idea for the long-acting pain med as opposed to short-term narcotics. Then my PCP took it over from there. My pain clinic was in a big teaching hospital, and every time I went I would see a different resident, even though my specialist would technically oversee everything.
Without sounding alarmist, I wonder if it wouldn't be possible to contact the LLMD and indicate a kind of crisis of managing the disease and treatment is occurring.
The patient needs some directed support to manage the pain, manage various other symptoms, get support w. compliance of water and supplements, and to address the very real concern that due to not drinking, toxicity from the treatment itself may have built up, making the LLMD's current treatment plan in need of adjustment.
She may also be needing professional emotional support w. dealing w. this difficult disease and being a dependent adult and so ill.
I know an LLMD cannot always address all issues. But he or she seems to me to be the place to start.
I have a real sense of a medical team not working as a medical team.
In the case of a young person infected with 3 such infections, an integrated approach, with all areas of expertise in communication and in support of each other seems almost imperative. I am genuinely concerned that the GP is a "non believer." That means communication betw. GP and LLMD will be tense, if existent at all. That just does not bode well.
I would start w. the LLMD and assume the management of the disease has broken down and that adjustment is needed ASAP.
Not thru anyone's fault! It is not the daughter's fault!
I think this disease, and certainly Lyme + co-infections requires a whole lot of support structures. No one person or family can do it alone easily. I do think everyone needs to be able to work together, or at least the GP and LLMD.
I'm sorry if that sounds radical or alarmist.
It's just clear that a type of crisis has occurred and help is needed to find a new path.
This has happened at one time or more to all of us, I'm willing to bet.
Lyme Dad, please keep us posted. We care.
[ 06. December 2005, 02:51 PM: Message edited by: henson2 ]
Posts: 1066 | From East Coast | Registered: Dec 2000
| IP: Logged |
posted
My husband is a police officer specializing in drug intervention and he has taken many classes on drug abuse.
There is a big difference between being "dependent" on a drug and "addicted" to one
A dependent person takes the drug to maintain a quality of life much as a diabetic uses insulin. It does nto effect their daily lives in any way by taking the drug.
A person who becomes "addicted" to a drug will end up allowing it to get in the way of life. They can become preoccupied with watching the clock for when they can take the next dose, panic if they cannot get the drug, and lose interest in daily life activities in favor of the drug.
I am not a Dr, but I have been lucky enough to sit in on a class my husband took with a Pain managment specialist who really broke down the "myths" and the Truth surrounding different substances.
I know open communication with your Dr is key and if you are working with a good Dr they will know to look for certain signs of a problem.....
Good Luck to you and I hope that your daughter starts to feel better soon.
Posts: 437 | Registered: Sep 2004
| IP: Logged |
I just wanted to let you know that I have Lyme and I have also worked in the past with many many people who are chemically dependant.
Although addiction and dependance are truly different, it is very possible to become addicted to pain meds. I have known many people in recovery who started out taking the meds for pain or sickness. It does happen and it is a concern. These drugs are highly addictive. It's just important to know that.
100 norco in 6 days indicates a problem with either ineffective meds or addictive behavior. I agree with henson that this does seem to be a bit of a crisis situation no matter what the cause.
If you can rule out addictive behavior, that would be a great first step. Lots of posts above described some of what that is like.
But either way I don't believe that it is possible to heal Lyme and co-infections by taking that amount of narcotics. This is why I feel the medication situation should be dealt with as a priority. I don't believe her Lyme meds really have a chance to work properly with all that other stuff in her system. And mepron, for example, becomes an expensive and ineffective yet debilitating waste of time.
Also, when she herxes, a large part of the neurotoxins released will attempt to exit through the kidneys and bowel. If they are compromised, then the toxins will end up sitting there and eventually getting reabsorbed into her system, in effect poisoning her, making her worse rather than better.
If she is able to taper, that would be great. If she is able to find a better combination of fewer and more effective meds, that would also be great. I love the idea of a group approach, a "team" that someone mentioned.
If she is addicted, then she needs help because she will not be able to get better from lyme putting that many drugs into her body. There are good facilities that have doctors who can make sure she gets her right lyme medication. But I hope that this is not the case and that she is just dependent from taking the wrong meds.
Again, it is dangerous to just stop benxodiazapenes due to risk of seizure, so please be careful. Also, after time, clonopin can actually *cause* anxiety and disomfort, the opposite of what it initially does.
You are a wonderful dad and I wish you the very best and it's great that you are such a wonderful support your daughter.
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
| IP: Logged |
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Suggesting that all the docs involved work together for your daughter's benefit is far from radical. It's called integrative medicine or team approach and it makes total sense.
Unfortunately, it happens less than it should by far...especially in lyme situations. My husband has esophageal cancer and we have a hard time keeping the oncologists, radiation oncologists, surgeon, and other doctors communicating with each other. Keeping them all in the loop shouldn't be our job, but in reality it is. With our diseases it's even tougher, particularly if our docs are spread out geographically.
Lymedad, give Dr. H a call....tell him the amount of meds she's taking, tell him how horrible her symptoms are right now....He's a good man and a good doctor.
There are many strong beliefs and emotions around the topic of addiction. I suggest you let that rest for the moment and deal with the immediate situation of allaying your fears and finding some relief for your girl.
When my symptoms were at their worst, totally debilitating, my doctor put me on medicaiton furlough...I stopped all the lyme and babesia meds for ten days, rested, drank loads of fluids, and rested some more...ice cream was my favorite medication for a few days....until I could feel strong enough to arrange appointments to reassess and begin again.
Again, I think you're a great dad....and you have my support.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I think you should keep in mind that since your daughter is taking Zoloft, a selective seratonin reuptake inhibitor, that there are some drugs that her liver might have problems with.
I think this requires some genetic testing. If she does have this problem, it could make her very sick.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Lyme Dad,
Just wanted you to know I was keeping you and your family in my thoughts and prayers.
I had a botched lumbar puncture and it really messed up my back, I was eating Vicodin like they were candy and thought for sure I'd become a Vicodin junkie.
But like the others have said, once the pain went away, so did the need for the meds. I have been off all meds for over 2 years and am doing very well.
I am hopeful that your daughter will stop using these meds, when they are no longer necessary as well. With the help of her LLMD, and the support from such a wonderful father, she is on the path to recovery. It will take time, but speaking from experience, it does get better.
On a aside note, I wanted to share that my sister has Trigeminal Neuralgia...it is know to cause the most excruciating pain, know to humans. She has had 3 brain surgeries and even something like a gentle breeze, can trigger an episode of extreme pain.
The pain she has is so excruciating that she has had to have injections into her head, to block to pain. I forget what it is called, but the procedure is gruesome, but it does work..for a while.
She is on oxycodone, methadone, nurontin, you name it. Vicodin is like a vitamin to her..it doesn't being to touch her pain.
There are weeks where she is unable to leave her home. She is only in her 30's and she is a prisoner to her pain.
I was told by one of her doctors, that over 50% of patients with this disease, end up committing suicide as the pain is so horrific.
And I have to say, it kills me to see her so drugged up that she can't function. But I know she needs these meds to keep living. It isn't a chose.
Luckily, in her case, she does get a break from the pain. She can go as much as 3 weeks without an episode. And even though she is on some heavy duty pain meds, she never takes them when she isn't in pain. Never.
I certainly understand your concern, and trust me, it has concerned me for 4 years with my sister. But she and so many others have told me that without the pain meds, it would be too painful for her to chose to live. So I keep my mouth shut and pray that the next procedure or surgery will answer our prayers and she will be pain free.
My heart goes out to you, as I truly understand what you are going through and how you want to help, but are unable too..
God Bless, ~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
| IP: Logged |
i have been a member here for quite a few years, but normally just lurk. but i absolutely had to de-lurk for this one...
i got my llmd's name from somebody on this site, and it just happens to be the same llmd your daughter sees. and, as it happens, i am also in so-cal. and, as it also happens (lots of things happening here), i am seeing a pain management doc here that seems to be fairly accepting of my lyme/co-infections diagnosis, although i was seeing him long before these dx. i thought i was just dealing with fibro, cfids, etc. you know the story, right?
i'm in long beach, we'll start with that. my pain doc is here, and i think he may be a good one for your daughter to see. if you want his number, please pm or e-mail me (however you can get through, cuz i'm not sure exactly how to do the settings here so email can get thru). also, did you know that after you begin treatment with dr. h that you are allowed to have his 'magic' phone number, the one to his cell phone that he carries with him constantly? if you don't have that # i could certainly imagine no harm in giving it to you, since you 'qualify' to have it... and i absolutely believe he would want to hear about what your daughter is going through, kinda-like RIGHT NOW, you know?
as far as pcp's and other things down here, well, i'm having a hard time with that as well. however, i do have a list of potential lyme-sensitive docs down here that i could share with you but have done no research on yet myself. i got these names from the support lady that dr. h gives the phone number for... and i did finally contact her last week. maybe we could weed through the list together and see if we come up with somebody compatible with us lymies, eh? and that would be something, let me tell you.
i do so empathize with the situation your whole family is in, i had to post to you.
btw, before i forget: the first time i saw dr. h i had to go all the way up to palo alto, then the next time i saw him i only had to go to malibu, and i'm waiting for my next appt. to hopefully only go up the street to see him here in long beach. have you tried to get to see him in one of his lower-california places? certainly would be a lot easier, i think... but dr. h is definitely worth going all the way up the state to see, if that's the way it has to be.
anyhow, here's what i have, and would be absolutely happy to give you any/and or all of it. please, please... give a good pain doc a try before considering a detox scenario. i am on quite a high amount of pain meds, due to the tolerance issue, but i'm well monitored (monthly, or any time i have to see him). and dr. h seemed to be nothing but glad that i was already dealing with the pain issue in an effective manner, since he doesn't deal with it himself.
please don't hesitate if you feel any of this would be of any use... please.
thinking of you all, denice
editing to add: well, i have only been a member here since june last year, so 1-1/2 years. my how time flies, eh? Posts: 3 | From california | Registered: Jun 2004
| IP: Logged |
We are overwhelmed with the responses from you all. You will never know how much we appreciate your input. We have learned more than we ever imagined. You have been a real blessing to my family.
Thank you,
LymeDad
Posts: 681 | From California | Registered: Oct 2005
| IP: Logged |
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Hooray! Someone close by to offer real help..!.
Hooray for de lurking when the moment is right!
Hooray for a community that supports its members...!
We are all blessed to have this place to come for answers and support!
Lymedad, let us know how your daughter progresses. She's on my mind.
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
| IP: Logged |
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Amazing the wisdom and compassion that can come out of our communal need.
Lymedad, please do let us know how things go. It sounds like you have the beginning of something down there in So Cal. My local group has been critical to my survival. I hope one develops for you and your family, as well!
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
I'm no expert on narcotics and dependancy, but it's my understanding that while there's PAIN, the drugs block the receptors to alleviate pain, and there's not dependancy UNTILL the pain subsides but the drugs are continued.
It[s a fine line. The drugs should be weaned when her pain levels start to improve.
I think you're going to have to go with what your Doc tells you on this one, and I assume the Doc knows everyting she's on, and how best to handle the weaning when she's ready.
A detox center for addicts might be premature at this point.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bow]](graemlins/bow.gif)
![[woohoo]](graemlins/woohoo.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic