posted
My 18 yr old son started his first round of orals two weeks ago. At this point some of his previous symptoms have increased ( along with several new ones ) . He's already taking a morphine and valium on a daily basis to manage previous symptoms, but is now saying that the pain level since starting antibiotics has increased, and the current dosage is not adequate. Has anyone else been through this where major pain meds were already being used, but after starting treatment were no longer effective ? Currently his lyme treatment is w/ an out of state Dr while the pain management is handled through our PCP.
Posts: 32 | From NC | Registered: Jan 2008
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bettyg
Unregistered
posted
can anyone give feedback here? thx!
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posted
I am sorry to hear about your son. I was taking pain medicine before I was diagnosed and my pain also increased during treatment. When I say increased I mean that my pain went from a 4 to a 9. I think this is from the antibiotics stirring up all the spirochetes. A good option for your son would be if he was on a long lasting pain med and a pain med to take for breakthrough pain. I hope your son feels better!
Take care, Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
if the PCP does not know about pain management well, go to a pain specialist. they are usually a pshysiatrist.
I cannot stress enough the importance of being on a long acting pain med (one of the extended release type either morphine, fentanyl, oxycontin) and then taking a short acting one for breakthrough pain.
i take extended release morphine 15mg 3 times a day. the extended release is absorbed slowly as to not make you feel dopey or drugged.
then on the days I need it I take vicodin, sometimes i need one vicodin, sometimes I need 6. there is no problem going from 6 down to one when the flare-up subsides. this way you dont get dependent on the dose, if you just take enough to get the pain level down.
Posts: 615 | From maryland | Registered: Oct 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
My heart definitely goes out to your son. I too was on pain killers (percoset) before my diagnosis, but was one of those people that just couldn't tolerate the meds.
So with that, I tried every alternative you could imagine...accupuncture, chiropractors, massage therapy, hypnosis...you name it.
When I finally got the lyme diagnosis and was put on the abx, I was in so much pain...to the point that I wasn't even coherient most of the time. I was laying on a heating pad 24/7 and in tears most of my waking hours.
They tried me on neurotin and similar neurological pain meds which I understand are a wonder drug for some, but for me, I had too many side effects.
I remember this time frame as a horrid nightmare and your best bet may be to have your son see someone specializing in pain management since each person is an individual and what works for one, won't for another.
With all this said, I've been on treatment 17 months and although I still have some crazy stuff going on, the pain is so much lower. It DOES get better.
I know that everyone kept telling me that as I was writing insane messages here, begging for help. But they were right...although you can't see past the pain in the beginning due to the herxing....it is the process of reversing these symptoms and it DOES get better.
But for now, perhaps a specialist could help get over this rough point. Please keep us posted on how your son is doing.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
If the pain is increasing after taking abx - it seems like he is herxing. The bacteria is dying so it releases endotoxins into the body & we get more ill.
My doctor always told me that it's not necessary to endure excrutiating herxes to get well. You may need to adjust the dosage of the abx or ramp them up so it's more tolerable. It's a good idea to procede gradually. Going through very painful herxing is counter-productive since it is very stressful on the body.
There's also lots of info on this message board as to what to do to detox from painful herxes. It's really important to always detox while killing the spirochetes.
Different people have different approaches to detox. You just have to try things to find out which things work. Hot baths in epsom salt, saunas, light exercise or stretching, various supplements or drugs to absorb the toxins all seem to help.
I also take oxycontin for pain. In many studies it is found that 98% or so of people in pain do not get addicted to pain medicines.
The people who get addicted are usually people who like to get high - not people who need pain medications to function. People in pain can build up "tolerances" to pain meds & may require more over time - it's not addiction, though.
Dealing with Lyme is not easy & it takes time. Unfortunately, there are no quick fixes at this time in history.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Yes,yes,yes--my daughter has endured severe pain with treatment and without treatment and not much works. We have been to 5 pain management doctors throughout this ordeal and they usually give up on treating her because they do not understand the kind of pain lyme patients endure.
In fact I read an article about a nurse who worked with cancer patients who had lyme and she said the pain was like what cancer patients experience. I do think detoxing helps, but we haven't figured out the best way to do that with my daughter yet.
Her current pain management doctor knows more about lyme than any of the others we have seen and seems to have her on a better protocol. She has an intractable headache and fibromyalgia.
She wears a duragisic patch. We started her at 25, then went to 50, and he just raised it to 75 today. He also has her on zanaflex and that helps her more than anything. As you probably know by now, lyme patients are all different so zanaflex may not work on your son, but there are several muscle relaxers and if he is not taking one already, I would ask for one. None of the other doctors ever put her on a muscle relaxer which makes me mad, because it seems to help so much. Don't get me wrong--her pain level is still an 8 but it has been a 10 for extended periods of time.
It is hard to see your child suffer, but you must be his advocate and don't let any doctor treat him like he is just a drug seeker because THE DOCTOR can not adequately manage your son's pain.
Hope he gets better soon.
Posts: 177 | From God's Grace | Registered: Apr 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Has he worked with a pain management specialist to manage the pain? There may be other medications that can help reduce the pain that are different than the types of medications he is on now.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thanks to everyone for responding and offering some really good suggestions. I'll definitely look for a pain management specialist. I welcome any suggestions for one in the Raleigh, NC area. Our PCP isn't convinced w/ the lyme diagnosis and is beginning to get nervous about all the extra tests I've asked to be run before the antibiotics were started. His comment , to my son no less, was " you know the insurance probably won't pay for these labs with a lyme diagnosis and it's probably going to cost your mom thousands of dollars ". Heaven forbid new testing is performed to rule out other diseases, but this doc is quick-draw with the script pad to crank up the pain meds or order yet another MRI " just to see if anything has changed " since the previous one only a month ago. This doc tried sending us to Duke . After waiting over a month for the appt, the Dr there canceled at the last minute. While trying to reschedule, the lady on the phone asked why were were coming to Duke. When I mentioned there was a possibility my son had lyme disease she quickly informed me " oh we don't do that ! " So like you I did some homework, located a well recommended LLMD and now he's being treated out of state.
I'm so tired of the mentality of these medical professionals who don't get it - the folks who give you the sideways glances when you question anything , or personnel in an ER who stare blankly at your child who's trying to describe their current pain/sypmtoms. Whatever happend to " do no harm" ? They look at him with such prejudice like he's faking and trying to con them out of medication. When he was 16 he had to have his gallbladder removed. The ER Dr at that time couldn't find anything wrong - kept trying to give my son antacids. They finally did an ultrasound ( probably just to shut me up ) and low and behold discovered this kids gallbladder was diseased and required immediate removal. We don't even bother w/ the ER anymore, but on the really bad nights use whatever means we have at home....medications if the monthly allotments haven't run out.. heating pads... hot baths and countless late night massages.
Currently my son is on 50mg extended release Kadian (morphine) and 20mg tabs of valium in addition to the regime of augmentin,zithro, plaquenil,Co Q10,alpha lipoic acid, probiotic, vitamins, lyrica and lamictal,
Thank you again for your support..and offering a place to vent.
Posts: 32 | From NC | Registered: Jan 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Always remember - you "pay" the doctors to perform a service for you.
You don't have to tolerate ignorant medical professionals.
I don't.
Some people may be stuck with outmoded insurance plans with under-trained doctors.
Just keep in mind that you are paying for the services you receive.
Usually, you have to pay after services are rendered... if you have the "cahonas" - just walk out the door if the medical professional gives you poor treatment.
This is what I'm going to do from now on.
After many years, I have found a doctor that I like. I have no insurance - I pay him a reduced rate since he knows that I've been ill many years & don't have insurance.
You can barter with many medical professionals. I have used this technique with several doctors & medical professionals.
Do not let antiquated insurance plans that maximize profits for the medical industry rule your life.
Go to doctors who have a heart & really want to help... not egotistical ignoramauses.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Haven't read the thread. Where is the pain located? Has your son seen an LLMD who is willing to vouche for him seeing a Pain Management Clinic locally?
That's an option. The LLMD can write a script supporting your visit to a pain management clinic that may be cost effective with your insurance.
If the pain is located in a specific area, local treatments with mixed pain medications can be applied by patch or in a gel/cream to the area most affected. Wellness pharmacy makes such preparations, and some other pharmacies locally may. This works with Oxy/Morphine and some other pain killers.
Don't forget that you can pull back on the antibiotics and plaquenil to decrease a herx reaction that may be spiralling out of control. You must confirm with your treating physician that this is ok.
None of this is medical advice, merely information I've picked up as a patient. I'm not a doctor.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
have you tried the epsom salts/peroxide baths in slightly hot water? I sweat like crazy and actually get dizzy but I try to drink lots of water.
It seems to help with the pain and I always sleep like a baby after I do it.
I'm so sorry for your son, I know what he's going through. I can't take most pain meds so they have me on elavil only. Some days it doesn't do a thing. Over the counter meds are useless.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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